Creating an Epidemic of Health
Collected papers
Tom Munnecke
Assistant Vice President
Science Applications International Corporation
10260 Campus Point Dr.
San Diego, CA. 92121
munnecket@saic.com
Heather Wood Ion
CEO
Visiting Nurses Association
Orange County, CA.
hion@earthlink.net
September 2000
Jonas Salk concluded that we need to “create and epidemic of health” to resolve
many of the world’s health problems. He said, “Only a few are needed to visualize and
to initiate a process that would become self-organizing, self-propelling, and selfpropagating, as is characteristic of evolutionary processes.”
These papers explore this concept, in light of recent global changes in
communications technology and our understanding of self-organizing systems.
Table of Contents
Creating an Epidemic of Health with the Internet .............................................................. 2
Jonas Salk’s Views on Creating an Epidemic of Health................................................... 10
VValeo Organization Description..................................................................................... 14
Comments on the Thoughts of Jonas Salk ........................................................................ 17
Tipping an Epidemic of Health ......................................................................................... 19
Steps Toward an Epidemic of Health ............................................................................... 27
Ensembles and Transformations ....................................................................................... 35
Health and Positive Discourse .......................................................................................... 44
Health and the Devil’s Staircase ....................................................................................... 54
Personalizing Health ......................................................................................................... 60
Report from “Epidemic of Health” Meeting ..................................................................... 67
New Health and the New Economy .................................................................................. 73
From Enterprise to Person-Centric Health Information Systems ..................................... 84
1
Creating an Epidemic of Health with the Internet1
“It is possible to create an epidemic of health,” said Jonas Salk.2 The convergence
of the Internet, global communications, and medical technology have created an
environment from which dramatic new advances in health care and enhancement may
emerge.
The contagion for this epidemic is healthy people. In any population, there will
be some who have maintained their health, and serve as role models for those who have
not adapted as well. These people may be healers, or simply people who exude enough
vitality that others can benefit. Healthy people are contagious in face to face settings.
The Internet can leverage their presence around the globe.
The vector of this epidemic is information. It can build electronic communities,
share research, communicate knowledge, locate resources, share needs, and build an
evolutionary path to cope with future needs. In order for this to be shared, access to the
network must be global.
The world can be the population affected by this epidemic. As a result of the
herd effect, even those without direct access to the network can benefit.
The virulence of the epidemic of health can be assured because of the universal
need for health. Improving health can be a win-win situation for all concerned. Health is
not a commodity subject to supply and demand curves; neither is information.
The hospital, said Peter Drucker in 1973, is “one of the most complex social
institutions around.”3 Systems of hospitals are even more complex. The intervening
twenty-two years of technology, health care reform, and cost pressures cause even greater
complexity. Compounding these levels of complexity are global issues which make the
problem of global health care seem insurmountably complex. From a traditional point of
view, perhaps they are. This complexity can be addressed by innovative techniques. By
combining the dynamics of an epidemic with global communications, major changes can
occur. To quote Salk: “Only a few are needed to visualize and to initiate a process that
would become self-organizing, self-propelling, and self-propagating, as is characteristic
of evolutionary processes.”4
The Internet as a Role Model
The Internet serves as a role model for a self organizing, self-propelling, self
propogating system of immense complexity which has grown rapidly over the last 25
years. It connects an unknown (30 million?) number of people from over 100 countries
with millions of computers. The World Wide Web is a particularly active portion of the
Internet, and is currently growing at about 1% per day. All indications are that the rate of
growth of the Internet is accelerating.
The Internet grew from a small set of universities, and developed with a (then)
unique design attitude. Rather than convene committees and authoritative bodies to write
white papers and standards, they adopted a philosophy of “rough consensus, running
code.” As new ideas emerged, they would be discussed in various task forces. When the
1
Munnecke, Tom, and Ion, Heather, published in US Medicine Magazine, August, 1995
Interviewed by Bill Moyers, in The World of Ideas
3
Drucker, Peter, Management, Tasks, Responsibilities, Practices, Harper and Row, 1973, p. 4
2
4
Salk, Jonas, Anatomy of Reality, Columbia University Press, NY, 1983, p. 122
2
idea was deemed reasonably well formed, someone would program it and place it on the
Internet. The good ideas survived and propagated; the bad ones died away. The
Internet’s complexity evolved over the years from a simple initial condition and a well
defined fitness function: replicating good ideas.
A traditional approach to managing complexity, which harkens back to the
“Clockwork Universe” thinking of Isaac Newton and his contemporaries, is to break
things down into components, and resolve the complexity of each subcomponent. This
cognitive divide and conquer approach has worked for many problems which are
mechanistic or factory-like. For the sake of discussion, we contrast two types of systems:
policy based and adaptive.
A policy based system is controlled by an external set of rules, policies, or other
control mechanism. The system is governed by negative feedback: operations which are
against the policy are punished. The IRS tax code, driving laws, and bureaucratic
organizations are examples of this approach. The complexity of these systems is
restricted by the complexity of the policy; stability is generally considered a virtue. The
more complex the system, the more complex the policy. The system is supposed to be
predictable and behave repeatably, according to linear mathematical models. The role
model for behavior is the policy, and authority is an abstraction of the hierarchy. In
general, the goal of policy based systems is complex initial conditions, simple operation.
An adaptive system is controlled internally by positive feedback. Successful
operations are replicated. The system is assumed to be continuously changing and
growing. The system is its own definition, and complexity is a characteristic which
evolves over time according to the evolutionary “goodness” of the behaviors of the
system. Adaptive systems are not necessarily predictable, and display emergent
properties, in which the whole is greater than the sum of the parts. These systems are
non-linear, and display patterns of chaos. Any living thing, evolution of the species, and
the Internet are examples of adaptive systems. In general, the goal of adaptive systems is
simple initial condition, complex operation.
Consider the complexity of two problems: building a factory and tending a
garden. A factory (policy based system) is a very complex system, with many rules and
procedures for producing its products. If everything goes well, it will produce exactly
what it was designed for, no more, no less.
A garden, as an adaptive system, can be a very simple system. With the proper
amount of water, seeds, nutrients, and sunlight, a respectable garden may appear. The
results of the process are far less certain, and biological surprises may often appear.
The simplicity of the garden, however, hides an incredible complexity of the
chain of life. Even the smallest cubic millimeter of the garden holds immense scientific
complexity and evolutionary information. Those tending the garden, however, are free to
deal with simplicity.
So it is with the complexity of global health. Rather than considering it to be a
problem solved by the policy-based “factory” paradigm, it can seen as an adaptive
problem akin to tending a garden. The immense global diversity of health care needs,
resources, and models dictate that a highly adaptive and continuously growing system is
necessary.
A formula for designing adaptive systems might be:
3
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
Start simple, and let the system grow in complexity over time
Allow it to evolve based on positive feedback. Replicate success.
Decentralize to allow many points of view
Support lateral communications for operations, training, and the evolution of the
system
Assume that the system is constantly changing; expect the unexpected.
Alvin and Heidi Toffler wrote, “global competition means that we cannot go back
to the conformity, uniformity, bureaucracy and brute force economy of the assembly-line
era. But the Third Wave is not just a matter of technology and economics. It involves
morality, culture and ideas as well as institutions and political structure.”5
The Internet as an Infrastructure
As we move towards a global information infrastructure, we will once again
experience the sensation that the world is shrinking. Concepts of distance, time,
geography, borders, nationality, and community will all shift radically as we deal more
and more with bits of information instead of atoms of matter.
Globalization means much more than “Internationalization.” For the purposes of
this article, we will define globalization as the process of dissolving borders. Connecting
two medical facilities in the same town in the United States or connecting United States
and Zaire are two variations of the same problem of globalization. (Although the Zaire
problem is probably simpler.)
The Global Health Care Environment
There are three major aspects to the challenges of the globalization of health care:
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the definition of “health," and the pragmatic understanding of implications for care
the diversity of health care models
the different drivers of health care
The Definition of Health
The World Health Organization states “Health is a state of complete physical,
mental, and social well-being and not merely the absence of disease or infirmity.”6 The
problem with this definition is that by including the words ‘complete’ and ‘social wellbeing’ it turns the enduring problems of human happiness and social interaction into one
more medical problem to be treated by specific, scientific, interventions. Coupled with
the mechanistic and reductionistic expansions in technologically-driven capacities, this
opens a Pandora’s box of demands for ‘fixes’. Further, the definition’s interpretation has
removed the responsibility for such complete well-being from the individual and placed it
on the shoulders of the medical professional.
This definition does not convey the common world-wide assumption that health is
a functional state which makes possible the achievement of other goals and activities of
5
Toffler, Alvin and Heidi, Creating a New Civilization, The Politics of the Third Wave, Turner
Publishing, Atlanta, 1994, p. 36
6
Callahan, Daniel, What Kind of Life, Simon and Schuster, NY, 1990, p. 34
4
living. Comfort, well-being, and the distinction between physical and mental health
differ in social classes, cultures and religious groups.7
Attached to the definition of health is the consequent health policy in any given
community. If health is defined as a right of all people, access to health care is mandated.
If it is defined as a market-driven commodity, or as an individual’s responsibility, access
to health care services varies widely.
Models of Health Care
In 1990 Americans spent $10.3 billion on alternative health care modalities.8 In
1992 Congress created the Office of Alternative Medicine as part of the National
Institutes of Health. Even as we cannot assume that there is only one medical model used
within the US, we cannot assume that globalization through communication will dissolve
the boundaries between definitions and models. 48% of the world’s population is at risk
for the biggest international killer, malaria, and over 200 million people live in areas
where malaria is endemic.9 Yet for most of these people malaria is a condition of life, a
given, and thus not a reason to seek any model of care.
Major models of care around the world include:
Model
Region
Allopathic or diagnosis-based therapies
Western, professional medicine
Homeopathic or likeness-based therapies
European
Meridian or energy based therapies
Asia, and increasingly in the US
Manipulative or treatments by the hands
World-wide
Shamanistic or treatments by priests
Indigenous peoples, and folk healers
Ayur-Veda or balance restoring therapies
India
Herbal or plant-based therapies
World-wide
Even within one of these models of care, such as Western diagnostic medicine,
various interpretations of the disease process and of the healing or curative process mean
that specialists may differ not only in what they do, but in their perspectives on what
constitutes disease, health, and an ethically justified intervention. Where the medical
model has coexisted with highly scientific societies, the habitual ‘need’ for certainty has
insured a ‘need’ for specialized technology which has created a ‘need’ for specialized
personnel.10
Health Care Drivers
Delivering care involves a complex interaction among individuals, providers of
care, payors and communities. In some models, the individual receiving the care is not
the payor. In some models the patient is not the object of the care. In some models the
7
Hanlon, John J., Public Health, Mosby, St. Louis, 1974, p. 73
Reader’s Guide to Alternative Health Methods, American Medical Association, Chicago, 1993, and
Harvard Medical School report to the New England Journal of Medicine on “unconventional” medical
therapies pub. 1993
9
Segal, Gerald, The World Affairs Companion, Simon and Schuster, NY, 1991, p. 86
10
Bursztajn, Harold, Feinbloom, Richard, Hamm, Robert, Brodsky, Archie; Medical Choices, Medical
Chances, Delacorte Press, NY, 1981, p. 428
8
5
physician or provider of care must satisfy at least three masters: the patient, the payor,
and the community. Different groups balance these influences in contrasting ways.
Some of the drivers of health care services are:

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
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


population
economics
social responsibility or humanitarian concerns
environment including sanitation, water, natural resources
war
culture, beliefs, values
innovation
fear and legal systems of protection
These factors influence the content of care, the compulsion or impulse to seek it,
and the responsibility to pay for it.
In the US the movement to reform health care must somehow balance the demand
for universal access to care, and the demand to limit the costs of care. Both problems
may be clarified by better understanding of the definitions of health and of disease and
the consequent demands for care itself.11
Our Shrinking World
The challenge to global health care is a volatile mix of pressures from population,
poverty, new and drug-resistant pathogens, natural and man-made catastrophes, wars,
environmental degradation, mass travel, and extraordinary demand for medical solutions
to non-biological problems. HIV, hepatitis B, Ebola bacteria, or new threats to global
health exist independent of society’s differing health care models.
Partly due to these pressures, the health care community has been scaled up to
proportions greater than any nation-state or economic organization. In some countries
the health care delivery system is the largest employer, and the largest recipient of hard
currency. The World Bank has become the major external funder of health sector
investment in developing countries.12
Simultaneously, multinational companies are looking to developing markets with
major consequences regarding health care. Since 95 % of world leaf tobacco is
controlled by six transnational corporations, their power can often overwhelm countries
which do not have a clear tobacco policy, or where significant revenue is gained from
tobacco sales or exports. The tobacco company viewpoint is clear: “Until recently
perhaps 40% of the world’s smokers were locked behind ideological walls. We’ve been
itching to get at them--and we’re much relieved and excited that this 40% is now open to
us. That’s where our growth will come from."13
11
Castro, Janice, The American Way of Health, Little Brown, NY 1994, p. 112
Walt, Gill, Health Policy, Zed Books, London, 1994, p. 127
13
Walt, op cit., p. 146
12
6
With global marketing has come global consumerism. From consumer action, the
International Code regulating the marketing practices and promotion of infant foods was
passed by 118 countries at the World Health Assembly in 1981.14
There is no single, stable point of view in this expansion of activity, need, and
awareness on which to base a policy. With the huge numbers of degrees of freedom and
the explosion of human needs, a complex, adaptive, interacting web approach is
necessary to address the global commonality of concern for health.
Changes to the Practice of Health Care
We will discuss the worldwide impact and potential of the changes of perspective
which result from the decentralizing, harmonizing and empowering qualities of digital
interaction.15
Decentralization and Replications of Success
A transition to adaptive systems would provide an opportunity to evaluate policies
which effect global health applied at the local level. Enteric disease remain rampant
worldwide, and the safety of water supplies is a problem relevant in both the developed
and developing worlds. For almost two decades, solar disinfecting studies have
confirmed that bacteria from fecal sources which contaminate water are susceptible to
destruction upon exposure to sunlight for an adequate period of time. Drinking water can
therefore be rendered safe using clear plastic or glass bottles when exposed to sunlight for
85 minutes.16 Communicating this simple solution to highly motivated local users of the
Internet and World Wide Web, would create the opportunity to save the lives of over
25,000 children per day, by transformation of a “push” effort by world bureaucracies and
external organizations to a locally empowered “pull” operation of relevance.
The practice of medicine is an application of local knowledge. While a
physician’s discrimination will be informed by aggregate numbers of efficacy of test
results and appropriate drugs, the more local his attention to the circumstances of illness
and health, the more relevant the care provided will be. Decentralization of
communication means immediate comparisons of the local conditions of care without the
diluting, and often distracting, delays of the centralized systems of distribution and
approval or codification of validity.
How can the decentralized worldwide communications technology effect policy
change? Greater knowledge means greater informed choice, and the connectivity of a
global information infrastructure indicates that choice can be based upon the fitness
function of efficacy. What works best? What does no harm? Centralized policies can
now subject to the democratic and informed scrutiny possible with shared knowledge
based on an intellectual commons which accelerates and enhances our ability to correct
error and revise health care delivery on the basis of what is known to have positive effect
without negative consequence.
14
The sole opposing vote came from the United States on the grounds of a perception of interference in
global trade, but this was viewed as due to the twelve companies which control the bulk of the world infant
milk market. ibid., p. 139
15
Negroponte, Nicholas P., Being Digital, Knopf, NY, 1995, p. 229
16
Solar Disinfection of Drinking Water and Oral Rehydration Solutions, Guidelines for Household
Application in Developing Countries, Department of Environmental Health, American University of
Beirut, UNICEF, 1984--to present.
7
The mechanistic paradigm driving Western medicine has proven inadequate for
preventive care, chronic conditions, and behavioral medicine. Market-based values of
cost have not reflected the human and long-term impacts of this inadequacy. The
complex adaptive systems approach of communications technology makes it simple to
relate what we now know to our choices of what we must and can do. Communications
connectivity thus restores to medicine its moral role, and restores medical judgment to
primacy above measurable evidence. An informed patient, just as an informed
community, or country, can assume cooperative responsibility with the physician and
scientist to choose optimally, instead of passively expecting the physician or medical
profession to provide complete well-being. In such areas as infant mortality, the use of
prenatal care, and the coordination of community resources, dialogue among providers
offers potential improvement through alternative approaches known to be successful.17
Connectivity and Diversity
Another opportunity provided by the globalization of a complex adaptive
information technology, is the connectivity of shared interests and the harmonies thereby
created among diverse users, from diverse cultures and perspectives. One of the most
expensive consequences of the mechanistic paradigm in health care is its compulsion for
certainty.18 Not only does interactive connectivity educate us regarding other
possibilities, but in doing so it increases our tolerance both for diversity and for the
uncertainties of organic and adaptive systems. Such an attitude could radically change
cross-cultural health care, and the delivery of support or compassionate care.
This tolerance and mutualism is enhanced by another function of digital
communication--the exploration of free movement between generalities and specifics.
As the depth/breadth problem disappears with hypertext, traditional accusations of
“inadequate” or ‘insufficient’ regarding data become irrelevant, as the user can at once
see the fitness function: what works, where, when and how much is known about why.19
In all aspects of health care this creates an accessibility for experiment, evidence and
evaluation. Research will no longer be an additional luxury, but intrinsic to the process
itself.
Simultaneously, connectivity eliminates the boundaries between knowledge of
need and knowledge of resources. In global health care this is particularly significant
since we know that most famines, some epidemics and many untreated septic infections
result from distribution problems (information) not by lack of knowledge.20 By using the
The Women’s Health Data Book, 1995, Jacob’s Institute, Washington, DC, p. 140--use of prenatal care
has declined in the United States which ranks 19th in infant mortality among 33 industrialized countries.
18
35% of Medicare spending is for “futile” medical help which can neither save a patient nor extend lives,
approximately $100 billion per year is spent on wasteful tests of so-called defensive medicine, which
served only to show that the tests themselves were done, and another $100 billion per year is spent on
paperwork to justify what was done. Castro, op cit., p. 30-32
19
Negroponte, op cit., p. 69
20
In May 1995 a group of women in Atlanta, Georgia learned by FAX of the dire need for specific drugs in
Sarajevo, and were able to deliver forty-six pieces of luggage filled with antibiotics which will prevent
amputations of children’s limbs because of gangrene. Such grass-roots responses apply to the magnitude
of global needs with the immediacy of Internet awareness. Reported ABC news, June 9, 1995
17
8
electronic web connecting common concerns, we can better respond both more rapidly
and more appropriately than the hierarchical paradigms of the past have allowed.
How to create the epidemic of health on the Internet
The first signs of this epidemic are already appearing on the Internet. Patient
support groups, for example, have been shown to have a life extending effect in cancer
therapies, chronic illnesses, HIV positive individuals, and chronic heart disease.21 22
Extending these activities to on-line communities on the Internet could provide vast
benefits.
The BRAINTMR Internet support group, for example, was started by a young
woman who had a brain tumor successfully removed. As a survivor of this traumatic
experience, she is a powerful communicator to a group of people facing similar problems.
This group of 600 people from all over the world “meets” via electronic mail and shares
their experiences and emotional ups and downs as they struggle with this common
problem. The group simply emerged: it has no formal sponsorship or funding. (The
originator of the group, Samantha Scolamiero can be reached at
SAMAJANE@MIT.EDU)
Geriatric medicine has struggled with the fact that a significant portion of elderly
patients seek medical care due to loneliness and boredom. Linking isolated, often homebound elderly patients to each other via the Internet could have a significant impact on
social interaction, a sense of worth, and the related sense of well-being.23
1.
2.
3.
4.
5.
6.
7.
Start Simple. Couple a simple mechanism with a grand vision.
Devise a mechanism for communicating and replicating success.
Provide universal access to the global information infrastructure.
Build connectivity and virtual communities for health-related activities.
Support Patient Support groups on the network.
Publish medical knowledge on the Internet, make it freely available to all.
Create a health “metacenter” on the World Wide Web to serve as a focal point for
the evolution of the epidemic of health.
We believe that global communications can initiate an epidemic of health which
can be self-organizing, self-propelling, and self-propagating. In the event of a global
biological emergency, global communications could prevent or mitigate a catastrophe.
As a means of improving one of humanity’s intrinsic needs: health, it could become a
powerful source of positive reinforcement. As a means of aiding and comforting those
suffering from disease, it could build community where none was previously possible.
All that is necessary is to trigger this are those few people to visualize and initiate the
process.
21
Simonton, Carl, et al, Getting Well Again, Tarcher, Los Angeles, 1978.
Ornish, Dean, et al, “Effects of Stress Management Training and Dietary Changes in Treating Ischemic
Heart Disease” JAMA 249:1 (1983), pp. 54-59
23
Sauer, WJ, and Coward, RT, eds, Social Support Networks and the Care of the Elderly, Springer, NY,
1985.
22
9
Jonas Salk’s Views on Creating an Epidemic of Health24
I have been asked to comment on what Jonas Salk meant when he said it is
possible to create an epidemic of health, and on how we may use the Web to do so—in
fifteen minutes or less. This is reminiscent of Jonas’s charge to me in 1988 to translate
his stream of consciousness diaries into a cogent philosophy for our time, and into
practical tools to change individual lives, organizations and communities. Bill Moyers
named this philosophy “The Science of Hope.” My words today are an attempt to convey
his thoughts in the context of our meeting.
“Why postpone into the future what can be done in the present?” Jonas asked at
the celebration of the Year of the Child at the United Nations in September 1994. This is
his challenge to us today. We have the tools, we have the resources, but do we have the
necessary and sufficient desire to apply our responsibility and create a future of health?
Can we in fact, get to an epidemic of health from here? In health care we are at
present united only by our mistrust. Further, individuals do not view themselves as their
own best experts on health. Those of us who provide care are frustrated in an atmosphere
of competition rather than collaboration, even though most of us know that to serve our
communities well, we must cooperate. How can we become examples of co-operating,
evolving, participants in community? An epidemic is a prevalence of something in a
community at a given time. We all wish to transform what is prevalent at the moment—
violence, chronic disease, and isolation—into a cooperative, tolerant, and constantly
evolving commons from which we all gain support and for which we all feel responsible.
The vector for an epidemic of health is information. One of our problems is that
what data we have regarding health, not disease, is generally fragmentary and flawed.
Further, the mere existence of data does not constitute either knowledge or meaning. To
trigger a positive epidemic, individuals must find meaning in having informed choice,
and in acting responsibly on behalf of health. Further, public health depends upon a
sense of responsibility toward a common good. To create an epidemic of health, must we
first form a community?
Our first challenge is that of language. As we invert the dominant paradigm of
command and control, of feudal hierarchy, of linear transaction, we must remember that
our words reflect our perspectives, our perspectives create our actions and in
consequence, our reality. In health care our words reflect both the confines of a
particular tribe, and all too common moral greed of self-righteousness. The vocabulary
represents the mind-set of dominance and dependence. We must discipline ourselves to
speak today in new terms. Jonas obsessed like a bull with a matador over words. He
preferred to speak in terms of agency rather than knowledge, and of concordance rather
than governance. He worried at the growing decline of functional literacy in this country,
because we know that literacy is the most effective intervention we can make for
maternal/child health, and thus for the long term health of populations.
When we speak of health, let us speak of optimal function, and of what we can
imagine to evoke our own metamorphosis. Let us avoid the vocabularies of dependence,
failure and combat, which now dominate discussions of health. Language not only
Ion, Heather. Remarks presented at “Creating an Epidemic of Health” meeting in Washington, DC, May
3, 1999
24
10
conveys our philosophy of life, our assumptions regarding nature, purpose and values,
but it defines the ways we relate one to another.
Jonas perceived relationship to be the most fundamental phenomenon of the
universe. In order to understand anything we must have a sense of the fundamental
connections that form the backdrop of experience. The explosive growth of the Web can
build human relationships, and the web structure can help us abstract the qualities of
relationship. The metaphor of the web helps us to understand functional wholes of
cooperation which are far greater than the sum of the parts. In terms of inverted
perspective, the Web allows us to start anywhere in our explorations of self-generating
forms. Jonas would caution us here to remember that the Web has exploded because its
users are motivated by self-interest. We have yet to motivate self-interest and
responsibility regarding preventive health choices on any large scale.
When we talk of creating learning organizations, we need to recognize that the
organizing principle itself is learning. Jonas would say that because life is dynamic,
“each encounter evokes potential from every participant, each environment evokes new
possibilities within the dynamics of each encounter.”
In terms of a new vision for
health, this means recognition of mutual interdependence and mutual responsibility. It
also means hope, for the unknown becomes possibility. Our medical paradigm is one
option among many, each of us is the best expert on our own health, and responsible for
the effects we wish to cause. Causes can create remedies, and mind can change the
efficacy of any process.
“Complexity must have begun with the tendency toward complementary pairing.
It then proceeded toward the pairing of minds, the pairing of asymmetrical elements to
establish balance,” Jonas wrote in his book Anatomy of Reality. Our needs are satisfied
not by our existence alone, but through relationships that are mutually reinforcing. We
know from the successes of science that there exists a functional unity between
reciprocating causes and effects. From the cellular level to gravitational field theory,
interactive interdependence is the pattern of order. Mutuality is based on
complementarity, and thus diversity evokes potential through constantly dynamic
learning. The clinical success of buddy systems is well documented—by the geriatric
program at Boswell Hospital in Arizona, by the Birth Project in Sacramento, by “Sweet
Success” of the American Diabetic Association. Buddy systems help transform
organizations by expanding skills, streamlining work flow, and building ownership in
performance.
Mutuality can be applied to our uses of knowledge, and our expansion of
possibility. If we look to the studies of immunologic memory as well as the studies of
individual and social resilience, we see that every unit of life constantly transforms
knowledge into action. Communities recover from catastrophe, such as famines, in direct
relation to the knowledge of opportunities available to them. Knowledge is an experience
not an action. Most smokers know tobacco is not good for them. What is lacking is the
incentive for change. A data base is only as useful as the motivation of users converts that
data into meaning. Jonas would say that the answers already exist, it is our job to find the
right questions. We can enhance the positive without having to experience the negative
because we can imagine alternatives. When we accept that our existing organizations and
institutions have failed to solve most of our significant social problems, and move from
that acceptance to responsibility for changing our organizations, we can apply Jonas’s
11
insights. We need a national data base describing the successes that have been achieved
in support of health and community resilience, and we need to make our knowledge of
imagined alternatives accessible to all.
Since each individual exists in relationship to others, and since we live in groups,
how do we apply a concept of mutuality to society? In Native American languages a
healer is often termed a ‘designer.’ We can design our future in terms of the effects we
wish to cause, or the purposes we wish to serve. If we use information to expand
memory, whether we do so in terms of chronic disease or resilient communities, we free
ourselves from mechanism, and from pessimism. Information must be configured in
patterns appropriate to the source and the use, not merely appropriate to the tool. The
web and the community effects it can support is a better abstraction for health than the
measures of failure statistics.
But the crux of this approach is openness—experimentation, inquiry, adventure
for the purpose of transformation. If we are to design the co-evolution of mutually
beneficial self-interest in which we acknowledge our interdependence and choose to
sustain our shared purpose over time, then we must use connectivity to expand our
capacities and our opportunities. We now have, in Sir Isaiah Berlin’s terms, the second
type of liberty. We have achieved freedoms from, how shall we use our freedoms for?
Jonas hoped that we would use what we know of health to achieve conflict resolution for
groups in trouble. Conflict resolution among the constituents of our health care system
is critically necessary.
Can the VA serve as our laboratory for this experiment? How can the VA apply
some of these concepts to the creation of ‘virtual health care organization’ as outlined by
Kenneth Kizer? Can the self-interest of veterans become incentives for self-reliant health
choices? We have seen how effective Gulf war veterans have been in using the web to
generate support and eventual interventions regarding their experiences of symptoms.
Instead of disease-support groups, can we learn from this same population regarding
actions to support health?
Many of us are involved in turning around a given organization, or some
employees, or even, our own lives. We can achieve these turnarounds with understood
methods, which begin with a chosen purpose, precisely expressed expectations, and
persistent, visible function. To establish trust, we have first to become predictable. In
our current environment, that in itself is a challenge. Trust is ambiguous, and must be
reaffirmed through choice over time. Trust can be established by giving each other
reasons to permit action. In our studies of childhood resilience we know that one of the
contributing factors to resilience is the ability to reframe a given experience. In health
care at present many of our issues of mistrust stem from the problems of authority—
privileges granted, permitted actions—who you know, what you have, what you can do.
Perhaps by reframing these problems of authority we may be led to new solutions, or
better questions.
In how many different ways can we reframe what the VA does, the roles it plays,
the purposes it serves? If the hospital is no longer the axis of health care, what other uses
can we envision for a national research, educational, and care-giving system? What
would happen if we linked up our public library systems with our community resources
for seniors with the VA? What successes do we wish to replicate? What knowledge can
we use in other contexts? I think one of the greatest needs we have is to find out who is
12
doing what in terms of building community, where and how are they doing it, and with
what result? What aspects of the VA and its services and constituents constitute
community? Are these values transferable? How do we know?
My excitement and my discomfort with our efforts to outline a new conceptual
foundation for health care come from an awareness that we do not yet know what we
know. What truly contributes to health? What sustains communities under stress? What
languages enhance collaboration? Much of what we assume regarding health and health
care, I believe is untested—merely assumption and habit, or convention. I believe that
what we need at present a grand experiment—multiple approaches, multiple disciplines,
tolerant hypotheses of paradox and participatory analysis.
We need to use, as Jonas did, statistical variance analyses, not aggregates. If, as
Jonas said, the basis of order is relationship, then let us truly examine the relationships of
health. Of the health of the individual to the community, and of the health of the
community to the individual. Can what we know be measured? Can what we know be
replicated? The web can certainly help us design from the point of connectivity, and as a
metaphor it can refresh and expand our knowledge of who we are and what we can do. It
can be our mirror, and as such both tool and metaphor.
Let me end by reminding you that Jonas’ science of hope outlines a process. He
would call it the logic in the magic. We can become the agents of conscious evolution as
we apply our sense of responsibility for the future to present needs. We seek
concordance and resonance in our creativity. That is the first step toward making the
dream of an epidemic of health a reality. Survival of the wisest depends upon whether we
use our tools as good ancestors of the future. Jonas wrote: “Only a few are needed to
visualize and to initiate a process that would become self-organizing, self-propelling, and
self-propagating, as is characteristic of evolutionary processes.”
13
VValeo Organization Description
“valeo” meaning, “to have the power to achieve vigor, health and wellness.”
The Vvaleo initiative is a national effort to provide all individuals and communities
access to information, services, and resources necessary to achieve optimal health.
It will be a fair, group collective plan by all health-related partner, including
individuals, health care providers, insurers, purchasers, employers, and other
relevant groups.
“THE VVALEO INITIATIVE”
Creating an Epidemic of Health
The Vvaleo Initiative began in 1999 with a small group of individuals representing public
and private organizations committed to improving personal and public health. Jonas
Salk’s phrase “creating an epidemic of health”25 best expressed the common vision.
Contagion for such an epidemic is healthy people, while the vector for the epidemic is
information. Vvaleo seeks to discover and encourage individuals and communities to
create this epidemic of health by enabling a process and developing an organization to
link person-centered health and care information, resources and services.
In September 1999 140 community leaders, consumers, practitioners, educators, payers,
policy makers and philanthropists met in Cleveland to clarify the principles of the
initiative. Energetic discussion emphasized that no person should be unable to pursue
health, information, and care because of limitations of employment, payment, or social
conditions, especially since the science to improve and support health exists, and the
means to connect individuals to the necessary information and communities of shared
meaning has been developed.
The principles that guide the work going forward are:
1. The pursuit of health and care is an individual undertaking, to which every person
must have access, as well as an individual responsibility.
2. The rights, privacy and dignity of individuals will be respected in the use and
management of personal health information not under their direct control.
3. Individuals have the right to receive and control a complete copy of their own
personal health information.
The phrase ‘to create an epidemic of health’ is a recurring theme in the writings of Jonas Salk M.D., who
served as the conscientious editor of the publication in US Medicine in 1995 by Tom Munnecke and
Heather Wood Ion, when he gave the authors encouragement to expand and use this phrase.
25
14
4. Vvaleo is an inclusive process, based on open, respectful and personal
participation, and centered on personal definitions of health.
5. Vvaleo is self-organizing and self-governing, enhancing trust and public benefit.
6. The meaning of ‘an epidemic of health’ will be derived through the Vvaleo
process and will continually evolve.
As indicated in these Principles, the Vvaleo effort requires a new form of organization,
one that transcends individuals and existing organizations and generates the confidence
necessary to connect all parties and communities. Health care at present is united by
distrust but cooperation based on mutual benefit can evolve through self-governance.
The Vvaleo volunteers benefited from the resources of The Chaordic Alliance26 and its
founder Dee Hock in facilitating the self-governance of complex initiatives. The
volunteers have also used the techniques of Appreciative Inquiry developed by David
Cooperrider in order to elicit positive conversations in a self-sustaining discovery
process. Both are involved in the United Religions Initiative which over five years has
brought representatives from all over the world together to form an inclusive organization
serving the purpose: to end violence in the name of religion. The process of developing
the shared meaning, principles of collaboration, and charter for the future in the URI
establish a model of success for the creation of a transcendent effort uniting all peoples in
the pursuit of health.
While the first discussions of the present organization began through the interest of the
Veterans’ Health Administration because of their drive to become a patient-centered
organization, other non-governmental health constituencies rapidly became involved.
Over the course of eighteen months, representatives from academic medicine, health care
improvement institutes, patient advocates, providers, systems companies, and
professional associations have joined the effort. Over $600,000 has been raised to sustain
the collaboration and outreach to date. The participants at the September 1999 meeting,
called “A Time for Decision” voted overwhelmingly in favor of moving forward. As one
of the speakers stated: “I do not know if this will work, but I want my grandchildren to
know that I was part of the beginning.”
To sustain the development of an infrastructure supporting the effort, the group adopted
the name Vvaleo from the Latin “valeo” meaning, “to have the power to achieve vigor,
health and wellness.” It is incorporated as a not-for-profit 501 c 3 corporation, and the
University of Texas Health Sciences Center at Houston serves as fiscal agent. The entity
is not policy based, but driven by a sense of responsibility toward the common good
expressed through an adaptive systems process. A primarily goal is to engage those who
have not had access to the present system of care and to hear and respond to their values
and needs. This is the dream to ‘lift every voice’.
What remains to be done is to design the programs of the group, gain the trust of the
participants, provide the information or create an individual knowledge base, and
stimulate the transformative actions necessary to sustain health. The board of directors
26
The Chaordic Alliance was founded by Dee Hock, CEO Emeritus of VISA.
15
and the participants in various Vvaleo meetings have established three work groups to
deal simultaneously and interactively with the following priorities:




Design and form the self-governing organization.
Conceive and initiate the national conversations about health, and help motivated
users convert the data from these conversations into meaningful knowledge.
Explore the means, and the ways to enhance trust for person-centered, open,
confidential and secure exchange of health and health care information.
As an inclusive effort, Vvaleo will work collaboratively to include all relevant
and affected parties, and to enable individuals to make informed choices
regarding what they need and want to support their health and care.
The next step is a national meeting to bring this effort to the attention of a broader
national audience and to begin the first conversations as Vvaleo defines and establishes a
process for creating an epidemic of health. The Vvaleo Initiative invites your
participation, contributions, and involvement.
16
Comments on the Thoughts of Jonas Salk27
Wednesday, June 21st was the fifth anniversary of Jonas' death, so as we
struggled to deal with the pragmatism necessary to begin this great journey
of the epidemic of health, I was joyous on his behalf, and mourning that he
was not with us to share in the excitement. Since then, in the daily
abrasions of the nitty-gritty, and the quiet of the weekend, I have been
reflecting on what we found difficult, and on what lies ahead of us.
There was tension between the conceptual basis for our work, and the
housekeeping details of accountability and inclusiveness. Here are Jonas'
thoughts on the subject:
"I now see patterns of correlations as an aesthetic function and patterns
of cause and effect as a reasoning function.... There is, or needs to be, a
science of correlations to tell the thinking mind where to look next, or
what to do next, if with reason, we are to put to use such correlations,
for whatever value...1991 "Humans have the capacity to make magic but some
have the capacity to make magic logically. Some can do it logically and
others can do so illogically." 1993 Paradox evokes potential and
simplicity. As an effect upon our minds, paradox as opportunity reduces the
authoritarian justifications of linear logic, and enhances the
appropriateness of understanding to experienced function. Paradox teaches
us to value the unity beyond the thresholds of meaning to particular
minds." 1994
There was an undercurrent of distress at the immensity of the task we have
taken on sometimes expressed in our nervous excitement, and sometimes
expressed in our very cautious respect for our work. Here is Jonas talking
to Bill Moyers: "We are sitting here now hoping to communicate some ideas
that might be useful and helpful to others, for what purpose? Where have
these ideas come from? There is some force that is inexorable. Think what
would happen if we were to realize the power of that force, and what we
might be able to do with it if we were to try to discipline it, to engage
it for a purpose."
We kept asking if we had the right players, and who else should join us.
Again Jonas reflecting on the whole being greater than the sum of the
parts: "Those who are the cause, the initiators, are ploymerizers--creators
of living forms. Midwives who bring forth the ascent of Man. We need to
make conditions conducive and to create propitious times that they may
perform their function. Catalysts become involved in many different fields
of energy to influence a process, not to participate in a reaction, and who
27
Ion, Heather, prepared after VValeo meeting, Cleveland, June 2000
17
are not altered by the reaction, that they may go on. That they may
catalyze new perceptions."
In discussing the conversations we may create, and taking on the
responsibility for making sure there are consequences to what is learned in
those conversations, we may well benefit from one of Jonas's poems:
"Sense of self, sense of others
With compassion, empathy in symbiosis.
Feeding while being fed,
The state of love.
Self-sufficiency in free living
Organisms and individuals, species among species
Co-exist but do not consume.
Return to others
The benefits we receive in our lives
That those who follow
May be blessed."
When Jonas encouraged Tom and me to use the phrase "create an epidemic of
health" in our 1995 publication, he did not view it as a possession, but
that we were to propogate the idea as widely as possible, and would not,
because he trusted us, ever constrain the dissemination of these ideas.
And so to the final tension--the trusting of emergence, which is a whole
new way of being as well as thinking. I share with you my favorite of his
poems from 1983, his book Anatomy of Reality:
"My sail is full but I do not see what fills it,
Forces guide me as if I did not need a compass
It is enough that I should yield.
This is mysterious
I cannot see the forces that act upon me
From within and without.
I cannot deny their existence.
If I try, I suffer.
If I surrender, I become filled with the joy of life.
I can only yield.
I can only move in the direction toward which I am drawn
To a destination for which I have neither map nor compass.
I have never been there before.
As it is for me, so it is also for others."
18
Tipping an Epidemic of Health28
What if there were a health virus that could spread globally with the speed and
virulence of an e-mail virus? What if, instead of infecting a computer’s hard drive, the
health virus made its recipients healthier? What if, instead of relaying the virus to
everyone in the computer’s address book, a health virus spread this health to one’s circle
of acquaintances? Since half of the deaths in the United States are preventable by
changes in personal behavior, a health virus would have a large and fertile population to
infect and create new strains.
Jonas Salk concluded that the most powerful way to improve our health would be
to create an epidemic of health. Health would be contagious, spreading from person to
person in an ever-increasing and self-reinforcing cascade. In the same manner as a
disease-based epidemic, healthy activities and knowledge that are nascent in the
environment would suddenly “tip” into an epidemic.
At the tipping point, small changes can have a dramatic effect. As Salk said,
“Only a few are needed to visualize and to initiate a process that would become selforganizing, self-propelling, and self-propagating, as is characteristic of evolutionary
processes.”29
The Internet and the global connectivity it provides have created an environment
in which massive, global changes can happen with startling speed. It is possible to
employ these dynamics for the improvement of everyone’s health – to create an epidemic
of health.
From the perspective of those focused on the woes of our current health care
system, this vision may seem to be simplistic. However, trying to fix our current system
from within is like trying to get out of a hole by digging it deeper. The solution rests in
climbing out of the hole by taking a fresh perspective.
Considering the intrinsics of health, trends in computers and communications, and
new understanding of the behavior of masses of people connecting together, an epidemic
of some kind is inevitable. The question is, what will tip it, and will it truly improve our
health?
Why Do We Need an Epidemic of Health?
Our current health care system is based on a notion of an industry that “produces”
health care that is “consumed” by patients. This industrial model works for automobiles,
steel, and coal industries, where each enterprise allocates scarce resources according to
the laws of supply and demand. However, health is not a commodity subject to the laws
of supply and demand.
There is no central reservoir of health that is depleted when someone gets healthier.
The opposite is true: those avoiding or curing themselves of tuberculosis or alcoholism
improve everyone else’s health. Rather than pricing and allocating health as transactions
in a marketplace, the epidemic of health would trigger a positive feedback loop in which
28
Prepared by Tom Munnecke under contract for the Business Enterprise Solutions and Technologies,
Veterans Health Administration, Department of Veterans Affairs, May 2000
Munnecke, Tom, and Wood-Ion, Heather, “Creating an Epidemic of Health with the Internet,” US
Medicine Magazine, Washington, DC August 1995.
29
19
everyone, acting in accordance to their own self-interest, could become healthier. In so
doing, they would directly or indirectly improve everyone else’s health.
This is a shift from traditional thinking:
In spite of all the changes this last decade the health system still contains
the characteristics of a heavy industry: the application of bureaucracy and
technology to the production of care. Although the power relationships have
changed dramatically throughout much of the Industrial era, the health
system has been dominated by providers, insurers, employers, and
governments. They had the information, they made the decisions, they had
the power. Despite of the best intentions, it was the "Don't worry your pretty
little head" era.30
Our current health care system is based on the notion of transactions – specific,
predefined things that the health care provider does to a patient. A health care enterprise
will be reimbursed for performing a coronary artery bypass procedure. However, dealing
with the long term preventive activities that could avoid the need for the surgery are not
easily expressed in terms of the transactional model.
The epidemic of health deals with the notion of transformations – general, longterm changes that are driven by the self-interest of the individual. The role of the
organization or enterprise is to facilitate these transformations, and the ultimate
responsibility for the success of the transformation lies with the individual.
Twelve-step addiction programs are an example of this. From a transactional
perspective, because they are volunteer, non-profit organizations, they do not generate
any revenues. An accountant adding up the transactions of all twelve-step organizations
would conclude that they barely exist. From a transformational perspective, however,
they succeed or fail based on their ability to transform the lives of their members. If their
program works, and excites other members to join, the organization thrives. Their
success is not measured with a chart of accounts of transactions, but rather their
transformational success and the virulence of their message.
Our health care system is based on “doing” rather than “being.” Physicians are
trained to do things to patients. However, alternative behaviors may be more cost
effective, even according to traditional transactional accounting techniques:
“a patient's use of safety belts would receive less attention from the clinician
than the results of a complete blood count (CBC) or a routine chest
radiograph. A careful review of the data, however, suggests that different
priorities are in order. Motor vehicle injuries affect nearly 3.5 million persons
each year in the U.S.; they account for over 40,000 deaths each year.
Proper use of safety belts can prevent 40-60% of motor vehicle injuries and
deaths. In contrast, there is little evidence that performing routine CBCs or
chest radiographs improves clinical outcome, and these procedures are
associated with increased health care expenditures.”31
Lemieux, Jeff, “The Future of Health Care,” presented to the American Medical Association House of
Delegates, San Diego, CA, December 6, 1999 http://www.dlcppi.org/texts/health/ama.htm
31
US Preventive Services Task Force, Guide to Clinical Preventive Services, Second Edition,
http://vesalius.cpmc.columbia.edu/texts/gcps/gcps0006.html
30
20
Consider a physician who convinces a patient to wear a seatbelt, which saves their
life some years later. There is no accounting activity to measure this success – the
physician may not even know of the event. The patient may not even remember that their
transformation to becoming a seatbelt-wearer was triggered as a result the physician’s
suggestion. But the life-saving result was far better than any series of routine lab tests
and X-rays. Somehow, the long-term transformational value of apparently simple
activities has to be reckoned in the day-to-day decisions of the individual and the health
care provider.
A New Level of Connectivity
Envisioning health as an epidemic of personal transformation is a radical departure
from the current health care systems model. Rather than envisioning the system as a
centrally controlled, top-down producer of health care, we need to envision imagine
health as an interaction between millions of highly connected individuals.
One of the effects of having a highly interconnected space is that things happen
according to the dynamics of an epidemic:
“Epidemics are a function of the people who transmit infectious agents, the
infectious agent itself, and the environment in which the infectious agent is
operating.”32
For an epidemic to tip, there needs to be a change in one or more of the abovementioned factors. People and our understanding of what constitutes health are generally
stable entities. However, our communications environment has changed dramatically.
The Internet, the World Wide Web, e-business, and electronic mail have created radically
new conditions. This is the most fertile area to search for a trigger to the tipping process.
The technology of computers and communication has been undergoing dramatic
transition over the past decades. The transition from centralized, “clockwork” batch
processing systems to today’s swarm of interaction on the Internet is instructive. Kelly
describes this as the swarm effect:
“We find many systems ordered as a patchwork of parallel operations, very
much as in the neural network of a brain or in a colony of ants. Action in
these systems proceeds in a messy cascade of interdependent events.
Instead of the discrete ticks of cause and effect that run a clock, a thousand
clock springs try to simultaneously run a system. Since there is no chain of
command, the particular action of any single spring diffuses into the whole,
making it easier for the sum of the whole to overwhelm the parts of the
whole. What emerges from the collection is not a series of critical individual
actions but a multitude of simultaneous actions whose collective pattern is
far more important. This is the swarm model.”33
32
Gladwell, Malcolm, The Tipping Point, How Little Things Can Make a Big Difference, Little, Brown
and Company, 2000, p. 18
33
Kelly, Kevin, Out of Control, The New Biology of Machines, Social Systems, and the Economic
World, Addison Wesley, 1994, p. 22
21
Inverting the locus of control from the provider to the individual triggers many
changes in the patient – physician relationship:
“Whereas the clinician is often the key figure in the treatment of acute
illnesses and injuries, the patient is the principal agent in primary prevention
that addresses personal health practices. Therefore, one of the initial tasks
of the clinician practicing primary prevention is shifting control to the patient.
To achieve competence in the task of helping to empower patients and in
counseling them to change health-related behaviors, many clinicians will
need to develop new skills.”34
In the same way that the Internet revolution can create successful entrepreneurs or
computer virus hackers, the connectivity created by the Internet can be a tremendous
boon to society, or the source of danger and difficulty.
Health and the Swarm Effect
This swarm effect directly applies to our health. Plagues, epidemics, and the
effects of disease have shaped our history. Our ability to deal with the effects of public
health activities has been one of the greatest contributors to health in the 20th century:
“Infectious diseases such as poliomyelitis, which once occurred in regular
epidemic waves (over 18,300 cases in 1954), have become rare in the U.S.
as a result of childhood immunization. Only three cases of paralytic
poliomyelitis were reported in the U.S. in 1993, and none was due to
endemic wild virus. Before rubella vaccine became available, rubella
epidemics occurred regularly in the U.S. every 6-9 years; a 1964 pandemic
resulted in over 12 million rubella infections, 11,000 fetal losses and about
20,000 infants born with congenital rubella syndrome. The incidence of
rubella has decreased 99% since 1969, when the vaccine first became
available. Similar trends have occurred with diphtheria, pertussis, and other
once-common childhood infectious diseases. Preventive services for the
early detection of disease have also been associated with substantial
reductions in morbidity and mortality.”35
If we think the epidemic of health as a health virus to be spread at Internet-like
speeds, we must consider the environment and infrastructure within which it must
operate. Creating the conditions for the environment is a critical step to allow the
epidemic to proceed.
One of the most powerful positive feedback loops in the epidemic of health is that
the “health virus” operates on the same individual as the one spreading it further.
“Epidemics are, at their root, about the very process of transformation.
When we are trying to make an idea or attitude or product tip, we’re trying to
change our audience in some small yet critical respect: we’re trying to infect
34
US Preventive Services Task Force, Guide to Clinical Preventive Services, Second Edition,
http://vesalius.cpmc.columbia.edu/texts/gcps/gcps0006.html
35
ibid
22
them, sweep them up in our epidemic, convert them from hostility to
acceptance.”36
Factors Fueling an Epidemic
There are several reasons to be optimistic about the prospects for an
epidemic of health:
1. Much of health is “bits” instead of “atoms.” Knowledge, education, research,
and communication about healthy behaviors can be communicated quickly and
inexpensively over the Internet.
2. It is in everyone’s self-interest to become healthier. The momentum behind the
epidemic could be personal interest, not requiring altruistic activities.
3. We already know much of what is required to be healthy. We do not need any
scientific breakthroughs. While we can expect major developments and greater
understanding of the health process, this is not a necessary condition for the
process.
4. Approximately half of the deaths occurring in the US each year are
preventable by changes in lifestyle37. Those who would benefit from healthy
behavior are the ones who are most able to affect the transformation – the
individuals themselves. The potential gain from the epidemic of health would
have a huge impact on society, the economy, as well as our general health.
5. The emergence of the Internet and associated communications technologies
provides unprecedented person-to-person connectivity – an essential component
for the spread of an epidemic. More than just serving as an infrastructure,
however, the Internet can serve as a role model for the epidemic. For example,
the World Wide Web started as grand concept with just a few “seed” standards,
from which it evolved into a global phenomenon. Good ideas spread rapidly,
insuring that success was replicated.
6. Health is scaleable. Scalability, a concept driven home by Internet technology,
means that a system can grow freely without hitting limiting constraints in the
infrastructure that supports it. For example, if 1 million more people suddenly
adopted healthier lifestyles, it would not inhibit 10 million more from doing the
same.
7. Replicating success is built in. Those who have achieved health are generally
enthusiastic about talking about it. “There is no missionary like a convert.”
8. Connectivity is increasing at an increasing rate. This accelerator effect means
that the effects of connectivity will compound. The more health-related activities
which connect via the Internet, the more it will attract new people.
9. The Internet is a fertile breeding ground for “underground” activities. The
epidemic may emerge as a self-organizing “underground” activity outside of the
traditional management or health care channels. In the same way that
Amazon.com was an upstart from outside the traditional book-sellers community,
36
Gladwell, Malcolm, The Tipping Point, How Little Things Can Make a Big Difference, Little, Brown
and Company, 2000, p. 89
37
Bloom, Barry R. “The Wrong Rights”, Newsweek Magazine, Oct. 11, 1999
23
the epidemic may occur unencumbered by the difficulties of the current health
care system.
10. Health can be driven by the swarm effect. Everyone can get healthier in some
way. This can be contagious, infecting others with the same attitudes and
behaviors. This positive feedback loop can be used to drive the epidemic to everhigher levels of general health.
11. Improving health does not have to cost money. Getting people to wear seatbelts
is a matter of education and communication, not an issue of allocating scarce
resources.
These factors are mutually reinforcing. Each one of them feeds the other, and in so
doing, reinforces itself. This positive feedback loop is a requirement of epidemic-like
expansion. The conditions are ripe for tipping an epidemic.
Dampening Effects on the Epidemic.
However, there are also factors that dampen the epidemic.
1.
2.
3.
4.
5.
6.
7.
There is a time lag between action and response. Teenagers see immediate
benefits of smoking, but not long-term effects until it is too late. Expensive but
intervention for Type 1 diabetes on a 2 year old will save an even greater amount
of expenses and health problems in 15 to 20 years. However, there is a very low
probability that the health plan incurring expenses of the child will be the one that
save the money decades later.
Different feedback for different demographic groups. Elderly may see
greater benefit from exercise (stronger bones, less falls) than young; mothers are
particularly sensitive to education and training at the time of their first birth.
There is no “one size fits all” message for the health virus. It must be tailored to
the context of the individual, which will create many strains of the virus.
Most people already know that their behavior is self-destructive, but
continue it anyway. Smokers know that smoking is damaging their health;
overweight people already know that losing weight would benefit them.
Environmental effects drive unhealthy behavior. People with more income
and less time will spend more money on fast food, for example. As the economy
creates greater wealth, the level of obesity has increased.
Current management and control model. Systems which are managed and
controlled by traditional “clockwork” approaches, are easily overwhelmed by
positive feedback loops. Like a public address system in which speakers too near
the microphone create an overwhelming squeal, a health care system which is
based on centrally controlled, “clockwork” management could easily be
overwhelmed by “swarm” dynamics.
Not all of health is representable by bits of information. For example,
getting vaccines to children in need is not just a matter of communication of bits
of information or changing behavior. Vaccines are a commodity, and do require
“hard” resources to deliver.
There is no guarantee that an epidemic would tip towards improved
health. For example, an enthusiastic person could claim that they cured their
cancer by burying a potato under the full moon and energetically announce this
“cure” in Internet newsgroups and web sites. This message could be picked up
24
and amplified by other groups. Sometime later, someone searching for a cure for
cancer on the Internet could find a tremendous number of “independent”
confirmations that burying potatoes in the full moon can cure cancer. There must
be a means of injecting science, evidence, and trust in order to insure that the
epidemic tips towards health.
An Example of a Social Epidemic: Creating an Epidemic of Learning
The creator of the Sesame Street television series Joan Gantz Cooney wanted to
use the television medium to address the problem of literacy for three-, four-, and fiveyear old children:
Her agent of infection was television, and the “virus” she wanted to spread
was literacy. The show would last an hour and run five days a week, and the
hope was that if an hour was contagious enough it could serve as an
educational tipping point: giving children from disadvantaged homes a leg up
once they began elementary school, spreading prolearning values from
watchers to nonwatchers, infecting children and their parents, and lingering
long enough to have an impact well after the children stopped watching the
show.38
Sesame Street has been subject to more academic scrutiny than any television show in history – it
has been proved to increase the reading and learning skills of its viewers. And the effects of this literacy
have spread beyond just the watchers:
“There are few educators and child psychologists who don’t believe that the
show managed to spread its infectious message well beyond the homes of
those who watched the show regularly.”39
This learning epidemic cascades to affect our health in many other ways:
“There is no more vulnerable population in this country than people who
don’t read. This group has the worst health, the least knowledge of healthpromoting behaviors, and the fewest socio-economic resources to deal with
those problems… our preliminary analysis shows that patients with
inadequate literacy skills have a 50% increased risk of hospitalization,
compared with patients who had adequate literacy skills…we can only
speculate on the causes of excessive hospitalizations in this vulnerable
population. Less knowledge of self-care options, worse general health
behaviors, and less ability to negotiate today’s complex healthcare system
may all be major factors in the equation…
About 36 million people are eligible for Medicare in the United States…16
million [of the elderly] are functionally illiterate. The average hospitalization
cost per person per year for Medicare patients is $2,262…one might assume
that a 25% to 50% increase in the cost of hospitalizations for Medicare
patients with inadequate literacy skills. If we accept these assumptions,
38
Gladwell, Malcolm, The Tipping Point, How Little Things Can Make a Big Difference, Little, Brown
and Company, 2000, p. 89
39
Gladwell, p. 91
25
increased hospitalization costs directly attributable to inadequate health
literacy could total $8 to $15 billion per year.”40
Baker, David W. “The Impact of Health Literacy on Patient’s Overall Health and Their Use of
Healthcare Services,” in the Proceedings of “Health Literacy, A National Conference”, June 1997,
sponsored by Center for Health Care Strategies, Inc.
40
26
Steps Toward an Epidemic of Health41
“The patient is the center of the health care universe, not the
hospital…This will require a paradigm shift in how we view our
technology in the future.”42
Jonas Salk spent much of his latter years thinking about how to solve the
problems of health, concluding that we needed a paradigm shift to create an "epidemic of
health." This represents a fundamentally new approach to the notion of maintaining and
spreading health in modern society.
The rapid acceptance and growth of the Internet is creating a new environment
within which entirely new dynamics operate. Industry after industry is discovering that
the old ways of interaction and control are obsolete in the frenzied pace of today’s
Internet-driven environment. Some of these major changes are:
1. Personalization. Successful Internet activities are personalized to the individual’s
needs.
2. Evolutionary growth. New systems and businesses emerge in an evolutionary manner
from their predecessors. And, just like evolution, the exact nature of what emerges is
unpredictable.
3. “Internet Time.” Things happen quickly on the Internet. Traditional concepts of 5year strategic plans are rarely applicable to Internet-based activities.
4. Control. A central authority does not control the Internet. The success of a web site
is determined by whether or not people pay attention to it.
5. Overcoming time, distance, political, and geographical barriers. The Internet is
making the world smaller in nearly every way.
6. The law of increasing returns. In the same way that someone else’s purchase of a fax
machine made your fax machine more valuable, the fact that others are moving their
information and services to the Internet make it more valuable for those already on
line.
These forces can transform an industry quickly. For example, on-line trading has
taken over much of Wall Street largely outside the control or influence of the established
broker networks. Upstart “attacker” companies used the Internet to introduce new
approaches to trading based on the dynamics of the web. Older firms were required to
move to on-line trading due to this competitive threat. The forces of the Internet can
trigger massive changes in an industry, whether the industry wants it or not.
In a similar manner, the Internet can be used to transform the process of health
throughout the world. The question becomes, how do we insure that this transformation
serves to increase our health? Unless the proper initial conditions are set, it is not clear
41 Munnecke, Tom, Prepared under contract for Business Enterprise Solutions and Technologies. Chief
Information Office, Veterans Health Administration, Department of Veterans Affairs, July 1999
42 VA Undersecretary for Health Kenneth Kizer, May 1997
27
that the transformation will drive increased health. If not carefully tended, this
transformation could spiral in a negative way, serving to increase profitability of the
health care industry at the expense of the health of consumers.
Many factors can drive the epidemic in a positive direction:
1. People want to get healthier. This is a nearly universal goal of the population.
Although the meaning of health varies with the context of the individual, the overall
goal is very similar.
2. It is possible for everyone to get healthier. Health is not a zero-sum game, where
one person’s increase in health creates a corresponding decrease in someone else.
Health, in fact, can be propagated according the law of increasing returns: the greater
the degree of healthy interaction.
3. Health is mutual. As the old saying goes, “Those who teach learn twice.” There is a
mutual relationship between the teacher and the student. Those in support groups
who help others can find that they are also helping themselves. As we have seen in
various support groups, there is great benefit to sharing experiences and support
between peer groups. Many health processes can be structured so that they are driven
by a sense of mutuality.
4. Much of health is information. Information, and our ability to communicate and
understand it, is an essential factor in much of the health process. From the discovery
of antibiotics from bread mold, to the notion that exercise instead of bed rest can be
good for cardiac patients, dramatic changes in our health have come from
understanding information. Acquiring this information can be an expensive process.
Distributing this information, once it has been reduced to a bitstream can be
accomplished at very low cost.
5. Technology is providing low cost communication. The Internet and emerging
communications technologies are providing low cost, highly accessible information.
The convergence of the Internet and the set-top television box creates an even larger
within which the epidemic can occur.
6. Success can be replicated. Driven by the principles of mutuality, successful
activities will propagate throughout the relevant communities. Success is defined in
the context of the individual or community of interest.
7. Health is universal. Everyone is involved in health, whether they chose to be or not.
This provides a very large space in which the epidemic can proceed.
8. Health is a bottom-up phenomenon. In contrast to the top-down health care
industry (health care flows from providers to consumers), the health epidemic can be
largely driven by the energies and motivations of the individual.
9. The epidemic is on the verge of triggering. The density of the mousetraps in the
health space is rapidly increasing. This is a fundamentally new aspect of human
behavior. Never have so many people been interconnected in so many ways
independent of time and distance.
The Role of the Commons.
Rather than think speak of health as an industry, driven by market forces, it is
instructive to think of health as a public commons, something which is available for all,
and increasing in value to all. This is a practical notion: someone else successfully
28
Development
fighting off an infection decreases my chances of getting that infection. The healthier my
community becomes, the healthier each of us become. This upward spiral of increasing
health can be driven by the law of increasing returns – everyone becoming healthier
triggers everyone to become even healthier.
The commons effect can be seen in real estate. For example, Central Park in New
York is one of the most expensive pieces of land in the world. It could be sold to make
room for skyscrapers, which would solve many of the city’s budget problems. Instead of
paying for the maintenance of the commons, it could be a source of revenue to the city.
Despite these market forces, Central Park thrives as a commons for New York City.
If would be impossible to imagine buying a square mile of Manhattan to make it
into a park today, however. The window of opportunity has passed. The city will keep
the park, already established, as an intrinsic part of its community. However, it could
never afford to create it anew.
Too
Early
Window of
Opportunity
Too
Late
Time
Figure 1 Timeline of the Development of a Commons
There was a time in the development of Manhattan during which it was too
undeveloped to have a park, a time when it was feasible to establish a park, and a time
when it was impossibly expensive. Each of these stages is irreversible, and once the
window of opportunity has passed, it is forever closed. This can be seen in figure 1,
“Timeline of the Development of a Commons.”
In a similar way, the commons effect for the epidemic of health will have a major
impact on the future of e-Health. Will we have the foresight to create appropriate
commons for the good of all? Or will e-health develop as the equivalent of so many strip
malls and skyscrapers, devoid of sense of common good?
29
The Health Commons
One of the essential commons for the epidemic is science and evidence based
medicine. There is a vast knowledge and research base in medicine and health, largely
funded through public and philanthropic funds. This is one type of information which
belongs in the health commons.
Harold Varmus, director of the National Institutes of Health is proposing a system for
communicating scientific information electronically: 43
Electronic communication is making dramatic changes in the way
information is exchanged among scientists, including biomedical scientists.
Over the past decade, steeply increasing numbers of scientists on all
continents have abandoned traditional mail and faxes in favor of electronic
mail. Many log-on to GenBank and many other data repositories on a nearly
daily basis. The titles and abstracts of papers published in most scientific
journals are available "on line" from the date of publication and sometimes
even before; some full texts can be accessed electronically and downloaded,
with or without subscription fees; and convenient, freely accessible
resources, such as PubMed (http://www.ncbi.nlm.nih.gov/PubMed/), provide
powerful engines for searching the biomedical literature. In at least one field,
physics, preprints are made freely available electronically to interested
readers, through a server called "e-print" (http://xxx.lanl.gov). In other fields,
including biology, many laboratories maintain World Wide Web pages that
offer their colleagues deeper views of the data that support published
findings, describe methods in detail, illustrate the most recent talks given by
lab members, and serve as important sources of specialized information and
links to other Web sites and citations.
Despite these welcome and transforming changes, the full potential of
electronic communication has yet to be realized. The scientific community
has made only sparing use thus far of the Internet as a means to publish
scientific work and to distribute it widely and without significant barriers to
access. Informative and even visionary essays have explored this topic (see,
for example, articles by Ginsparg [http://xxx.lanl.gov/blurb/pg96unesco.html],
Walker [http://www.amsci.org/amsci/articles/98articles/Walker.html], and
Harnad [http://www.princeton.edu/~harnad/nature.html], and references cited
therein, as well as other recent proposals
[http://library.caltech.edu/publications/scholarsforum and
http://www.arl.org/newsltr/202/intro.html]).
In this essay, we propose a system for electronic publication of new results
and ideas in the biomedical sciences. We do this with the conviction that
such means of publication can accelerate the dissemination of information,
enrich the reading experience, deepen discussions among scientists, reduce
frustrations with traditional mechanisms for publication, and save substantial
sums of public and private money.
These views have proven controversial. The window of opportunity for a
commons in scientific communication is already closing: Journals which charge libraries
$15,000 per year are not extremely concerned with the notion of publishing scientific
information over the web. An analogy to this process would be for a commercial interest
43
http://www.nih.gov/welcome/director/ebiomed/ebi.htm
30
to purchase a strip of land 6 inches wide around a National Park, so that they can charge a
toll for everyone who crosses their property. The firm is not creating value, but rather
assessing a toll on a commons held in the public interest. In the same way, health
information funded by public funds should be held in a health commons, and not subject
to a toll by squatters claiming the right to a toll for access.
The Web as a Commons
One way to look at the World Wide Web is to see it as a global commons for
information. As such, it is an evolutionary structure, growing from simple initial
conditions towards ever-increasing complex as it adapts. Simultaneously, the public’s
understanding and use of the web is evolving, creating a coevolutionary spiral between
the technology and the people using it.
The web can be understood easily as an evolutionary outgrowth of a few very
simple ideas:
1. A minimal set of initial conditions: URL, HTTP, and HTML standards
describing naming, transport, and formatting aspects of the web.
2. A set of constraints. All web pages are accessible via the IP communications
protocol.
3. An evolutionary “fitness function” defining what types of web pages would
succeed. This function is “attention,” those sites to which attention is paid
thrive, those which are ignored, die off.
These dynamics can be illustrated as follows:
consumer
attention drives
evolution
Innovative structures
emerge
s
tra
int
Co
ns
Amazon.com
s
int
tra
ns
Co
Time
e-Bay
Yahoo!
Initial
Conditions
Web information is
constrained to
Internet Protocol
Minimal initial conditions
include URL, HTTP, HTML
Figure 1 Evolution of the Web
31
The web began in 1989 as a modest technology, consisting of simple standards for
naming web pages (URL), a protocol for exchanging web information (HTTP), and a
language for formatting pages and making links between them (HTML). It defined
constraints on the system, namely that all information had to be accessible via the
Internet Protocol (TCP/IP).
There were a large number of competitors at the time who had their own
proprietary protocols: Compuserve, AOL, Genie, Prodigy, and others. Each of them
would have preferred to have their proprietary networks the foundation of the web. Had
this been the case, the web would have been controlled by a single company, which
would have defeated the web’s philosophy of openness. It would not have been a
commons.
A third factor, consumer attention, was the key that drove the web in the open
standard. People did not want to open an account and sign on to Compuserve for one
kind of information, and do the same for AOL for other information. Once it became
apparent that it was possible for information to be shared globally with just the click of a
mouse, then the barriers to the global information commons became glaringly obvious.
Users simply wanted to get the information, and producers of information came to be
valued according to their “eyeball” count – the number of people who viewed their sites.
Only the exceptional information provider could succeed by putting up a barrier between
their site and the public. If they do anything to discourage “eyeballs,” some competitor
would offer the information for free.
Connect to Compete
This “connect to compete” model rewards those who connect best with their
customers. The web provided a commons, an infrastructure upon which a new form of
competition has arisen. The web is not in a controlling position in all of this, but rather
has created an environment in which this behavior is rewarded. Consumer attention has
become a commodity, and those companies who have mastered this notion are the ones
who are thriving in today’s information economy.
It is instructive to note what the web is not. The web was not created by
authoritative committees deciding how to organize global information. The were no
preallocated ranges of numbers, dedicated to specific disciplines (web sites 1-100,000 for
physics, 100,001 to 200,000 for chemistry, etc.) The web was simply a chaotic mix of
information, which could be communicated and linked according to however the world
wanted to access it. Structure and order within the web were emergent properties which
evolved according to the dynamics of “connect to compete” and consumer attention.
These structures and this order were not predefined.
Although it is has become a household word today, in its infancy the web was a
very difficult thing to explain to people. After Tim Berners-Lee, who invented the web at
CERN laboratories in Switzerland, he needed to populate it with some information. He
connected it to the CERN phone directory. The reaction to these people was, “why go
through all this just to read our phone directory?” They did not yet see the value of
interconnecting everything in a global information commons. It would take several more
years for the system to gain critical mass.
From the perspective of someone just looking at the first web application, it
would have been hard to imagine the avalanche of events which would occur in the next
decade. How could a simple open standard in which no one had a financial interest
32
overthrow the powerful proprietary networks of the day? How could there be sufficient
interest to make people spend millions of dollars putting the information on the web
without a clear financial payback? Who would ever be able to find anything in this
chaotic mess? Who would manage and control this system, and who would pay for this
control? How will there ever be anything useful on the web, instead of just being an
academic exercise?
With the benefit of hindsight, these questions seem silly now. The web created a
new model for organization and complexity management. The key to the web’s success
was
1. Simple initial conditions
2. Minimal constraints
3. A fitness function which controlled the evolution of the system.
Applying Lessons Learned from the Web to the Epidemic of Health
The epidemic of health can be viewed as a recapitulation of the web experience,
applied to the context of health. From the minimal set of initial conditions and
constraints, create an environment in which entities which contributed to health thrived.
This is illustrated below. The initial conditions for the epidemic are created, as
well as the constraints within which the epidemic will be contained. Activities and
entities that improve an individual’s health thrive in this environment. Note the absence
of authority and centralization. There are no preallocated resources dedicated to specific
activities. There are a variety of powerful proprietary interests outside the epidemic, just
as there were a variety of proprietary networks outside of the web. The dynamics of
personalization, equivalent to the concept of attention in the web, drive the evolution of
the system.
Those who seek to understand systems based on hierarchical control structures
will have a difficult time understanding the dynamics of the epidemic of health. It will
appear that the initial conditions are too weak, control too dispersed, and existing
interests are too strong to make a difference. Any application of the principles, taken in
isolation without a critical mass, like the CERN phone directory application, will appear
to insufficient for driving the epidemic.
It is only when an “avalanche” of activities occurs that the full understanding of
the epidemic will be understood. At this point, the personalization process becomes the
driver. Those who contribute to individual’s health, as perceived by those individuals,
will be the ones who thrive in this environment.
33
Things which
increase
individual's
health thrive
Innovative health
structures emerge
tra
int
s
ns
Co
???
s
Co
ns
int
tra
Time
???
???
Constraints define
limits of behavior
Initial
Conditions
Minimal initial conditions
include Internet, personal
space, trust, mutuality
Figure 2 Evolutionary view of the Epidemic of Health
34
Ensembles and Transformations44
This paper introduces two conceptual building blocks as a foundation for thinking
about a self-organizing approach to health:
1. The transformation, which represents a flow of multidimensional, purposeful
interactions.
2. The ensemble, which represents a trusted community within which
transformations may occur.
The Concept of the Ensemble
The ensemble is a space within which the health process occurs. It is a community
of people, information, and associations that interact in a loosely coupled manner. The
ensemble provides a community for discourse within which emergent properties may
flourish. Ensembles are scalable, which means that they could be as small as to deal with
a specific issue for a specific person, or deal with millions of people. They can be
viewed from a fractal perspective.45
Each ensemble has a community, which is generally known to all participants. The
knowledge of this community allows participants to define and understand their own
radius of trust.
An ensemble is a space for discourse. Communications occur within the
ensemble within a given context. This context defines the openness or closure of the
community of interest. Each ensemble has its own identity, and is able to associate with
an arbitrary number of other ensembles.
Shared meaning within an ensemble is derived from the relationships and context
of the ensemble. Kenneth Gergen discusses the role of discourse and the concepts of
social constructionism:
“The meaning of utterances is generated in a dialogic relationship. There is
no meaning that is not derived from relationship itself…we find that the ability
of the individual to mean anything – to be rational or sensible – is owing to
relationship. The self cannot in this sense be separated from the other. Self
and other are locked together in the generation of meaning…to be means to
communicate.”46
In his vision, the self is inextricably woven into relationship. The ensemble
serves a focal point for this “selfness.” Once this is defined, ensembles are free to weave
themselves into new relationships.
Some examples of ensembles are:
44 Munnecke, Tom. Prepared under contract for Business Enterprise Solutions and Technologies. Veterans
Health Administration, Department of Veterans Affairs, July, 2000
45
Gleick, James, Chaos, Making a New Science, Penguin Books, 1987, p. 310
46
Gergen, Kenneth, Invitation to Social Constructionism, Sage Publications, 1999, p. 132
35








Primary physician/patient team
Surgery team
On line support group
Alcoholics Anonymous (national organization, local chapter, groups
within local chapter) could be nested ensembles
A family’s record of a hereditary disease
An electronic “sticky note” on a medical image, which contains a threaded
dialog in the context of the location of the note
VA’s FORUM communication system
A MailMan discussion thread
Summary of Ensembles
The properties of an ensemble are:
- A community of people, agents, knowledge, and other ensembles
- A basic unit for self organization
- Each ensemble has a unique identity
- They are able to relate to and associate with other ensembles
- They are a collaborative space for discourse and the creation of shared meaning
- Each has its own context
- They have specific “rules of the road” for confidentiality, privacy, anonymity, and
exchange of information.
- There is no characteristic scale; they may be very small or very large, whatever is
appropriate to the needs of the community.
- They are a space within which a transformation may occur. They provide a place
for holding state information for the transformation.
The Emergence of Self-Organization
“In the early 1990s, you had to travel in fairly esoteric circles to hear about
self-organizing systems. The notion wasn't on the lips of practical
businesspeople. It was the sort of idea that percolated far outside the
mainstream, at think tanks such as the Santa Fe Institute.
Today, self-organization is rapidly becoming a very hot idea, the essence
of which is that top-down master plans aren't the only way to build something
big and lasting. Unorganized assemblies of people can create everything
from marketplaces to computer systems almost spontaneously, on the fly,
from the bottom up.47”
We find evidence of self-organization everywhere throughout nature. A cut
finger heals itself, the body maintains homeostasis, and predator/prey populations adjust
themselves to their environment. We also find self-organization in man-made systems,
such as the World Wide Web and many of the companies it has triggered. One of the
greatest threats to Microsoft’s dominance in the software market comes from a selforganizing group of programmers creating the Linux operating system.
47
Bernard Wsocki, Jr., Wall St. Journal, July 10, 2000
36
It is intriguing to consider how self-organization may be used in the field of health
and health care. However, this forces us to address two questions:
1. What is the “self” which does the organizing? What is the entity that properly
serves as the core around which health organizes?
2. What is the scale at which this self-organization takes place? Is it the individual,
the family, the nation, the world?
Traditionally, we have focused attention on the interaction between the health
care provider and the patient, and we have measured this interaction in the form of
transactions. This orientation, however, does not deal well with other forms of
interaction such as family, community, self-help groups, or other forms of health
assistance. For example, someone who benefits from attending Alcoholics Anonymous
generates no transactions to be measured. AA is a self-organizing group that benefits
many people around the world, yet it is “invisible” to the world of transaction processing.
There is no single “self” which should drive self-organization in health, nor is
there a single scale which can be exclusively used. We must envision an approach that
deals with an arbitrarily large number of “selves,” which range from an issue involving a
single individual to large aggregations of people.
The Concept of the Transformation
A goal of an ensemble is a transformation – a purposeful flow of activities and
information. Transformations may be contrasted against the notion of a transaction.
A transaction measures interaction as a snapshot in time. It measures the
interaction according to predefined categorizations, such as the chart of accounts or DRG
coding schemes. These measurements are then aggregated hierarchically as a way of
understanding the overall operation of the system. This aggregation is then used to
reconstruct the flows of activities within the system.
Transactions and transactional thinking are ubiquitous in modern society. This
works very well for certain classes of activities. We can insert a card into an ATM and
get cash with ease and accuracy. The computing industry supports transaction processing
software, transaction monitors, and databases to hold transactions.
However, it is not always possible to apply transactional technology to complex
problems such as health. Interactions are transactionalized in one context, then analyzed
in the context of the aggregate. Furthermore, the context of the individual gets lost in the
aggregation. The interaction can have many dimensions, whereas the transaction only
measures one of them.
A transformation deals with the longer-term flow of activities in the context of the
individual. It sees the river as a flow, not a series of snapshots. Transformations occur in
a context specific to the community within which they occur.
An example of transformational thinking in a clinical setting is:
“What takes place as the patient and the physician interact….? One
exchange is that of perceptions of reality, what each knows about the
problem. Another exchange is that of trust: the physician trusts that the
patient both wants to change or solve the problem and is willing to take
37
action to do so; the patient trusts that physician has the appropriate skills to
repair damage or advise on the changes necessary to resolution. These are
the interactions of healing, older than Hippocrates and consistent still
wherever healing is practiced. The exchange is transformative in nature, not
transactional. The patient, and hopefully, the physician both learn and
become different consequent to the interaction. Commerce, the purchase of
products, is transactional – neither side of the interaction changes in function
or ability to function.”48
Transformations are based on an ongoing exchange of information and relationship.
This means communicating in the form of a dialog rather than a monolog. The ensemble
provides the space within which this can occur.
“We often speak of dialogs not just as conversations in general, but as
special kinds of relationships in which change, growth, and new
understanding are fostered. About this sense of dialog almost nothing has
been said… This is the challenge of dialog as a transformative medium. We
are not speaking here of a mere exchange of views, but of moving beyond
alienated coexistence to a more promising way of going on together.”49
Summary of Transformations
The properties of a transformation are:
-
They are process oriented
They are multidimensional – there is not necessarily a single metric by which to
define goodness or improvement
They take place within a the context of a specific community
They are purposeful – leading to a direction which is deemed to be an
improvement
They are stateful – based on past interactions
Improvements are directed internally, rather than imposed externally.
They have their own arrow of time. Transformations cannot necessarily be
“replayed” to have the same effect.
They are non-linear. We cannot necessarily add up transactions to get an
aggregated measure.
Ensembles as Therapeutic Spaces
As an example of the transformational value of an ensemble, consider the
following comment by a member of a support group for those severely depressed:
“To pretty much sum up my own experience with this medium, I feel that it is
absolutely invaluable. The last year…has been, to put it mildly, the low point
in my (and my family’s) life…I no longer sleep a full night…this message
Ion, Heather Wood, “Ethical Dilemmas in Managed Care”, in Ott, et al, Managed Care and the
Cardiac Patient, Hanley & Belfus, Philadelphia, 1993, p. 118
49
Gergen, Kenneth, Invitation to Social Constructionism, Sage Publications, 1999, p. 148
48
38
board has been my rock, as it is always available to me, and people are
checking in on a daily basis. It is enough to know that you are never alone in
the battle and there is always another person (or twelve!) there to help you
through rough times.”50
There are several lessons that are illustrated in this example:
The value of community
The role of trust
The value of dialog
The manner in which the
community establishes
shared meaning through
dialog
The role of connectivity
The role of relationship
and association with peers
The generative nature of
the community
The fact that it is
asynchronous – things
happen when they happen,
not according to a
predefined schedule
The importance of context
Emergent properties
Transformative dialog
There is always someone there to talk to; the
patient feels comfortable with the group
There is sufficient trust developed within the
group to allow them to talk about depression
and the problems of suicide
The method of communication is based on
interaction between participants, not a
monolog from an authority
The group develops their own narratives and
stories, creating their own culture and
language.
The group is available day or night, from
anywhere in the world using an infrastructure
that is already in place with the Internet.
The group allows them to associate with
others who share similar problems, some of
whom have worked through them, some of
who are learning from others.
Positive feedback drives the community
People can come and go on their own
schedule and needs.
The community and its culture create a
context within which the group can proceed.
The whole of the group is greater than the
sum of the participants.
People sharing similar problems and goals
are able to transform themselves, both
individually and as a group.
If a computer replayed the dialog back to someone outside the community, it
would be a monologue. Passive listeners would not know the context of the
conversation, nor would they feel part of the community. They would not know who the
50
Gergen, Kenneth, Invitation to Social Constructionism, Sage Publications, 1999, p. 213
39
participants were, what levels of trust they could ascribe to the speakers. They would not
be able to ask questions to clarify issues. In short, the shared meaning that was created in
the original ensemble was an emergent property of the interaction within the ensemble.
Merely playing back a transcript of the conversation is not a substitute for actually
experiencing the dialogue. Thus, the value of this interaction is in relationship and the
context. There is an “arrow of time” to the transformation and dialog. We cannot simply
reverse the clock and go back to the same state. People cannot “unsay” things, and
knowledge, once communicated, cannot simply be erased.
Ensembles and Transformations affecting the Clinical Process
Dr. Larry Weed, inventor of the problem-oriented medical record that is taught
throughout medical schools today, discusses an interview with a hospital patient about to
be discharged.
Dr. Weed: Do you have a copy of your own medical record?”
Patient: “No.”
Dr. Weed: Are all your medications in the bedside stand, and does the nurse come
around at regular intervals to see if you are taking the right ones at the right
time?”
Patient: “No. The nurse just comes with little paper cups with pills in them, and I
swallow whatever is there.”
Dr. Weed: “Do you know what a flowsheet is? What parameters are we trying to
follow? What endpoints we are trying to reach?”
Patient: “No.”
(At this point, Dr. Weed met with the medical staff to relate what he had found):
Staff: “We never give patients their records.”
Staff: “We do not have the time to give the medicines that way. It would not be safe
to leave her with them unattended. She is on many powerful drugs.
Staff: “The patient is not very well educated, and I do not think she could do all the
things your questions imply.”
Dr. Weed: “But, she is going home this afternoon. She lives alone. At 2PM you will
put her in a wheelchair, give her a paper bag full of drugs, and send her out the
door. Are you going home with her?”
Staff: “No. Is her management at home our problem?”
Dr. Weed: “You just said she could not handle it. Who will do it? The patient may
not seem well educated or very bright to you, but what could be more
unintelligent that what your are doing?”51
If the staff and patient in this example were part of an ensemble with a
transformational goal, much of the discontinuity and isolation expressed might not have
occurred. Perhaps there might have been a buddy system, where the patient could buddy
51
Weed, Lawrance, Knowledge Coupling, New Premises and New Tools for Medical Care and
Education, Springer-Verlag, 1991, p. 13
40
up with someone else who had a similar recovery process. Perhaps the staff could have
come up with creative ways of communicating the medication process to the patient.
Ensembles Supporting Collaborative Spaces
Creating a shared space within which collaboration can occur is a necessary step if
health is to become a collaborative process.
“Our goal must be to develop a system of medical care whereby all
individuals are nurturers of their own health care and have available to them
the guidance of an information system and the skills of providers who have
demonstrated competence in performing specific tasks that patients who
cannot perform for themselves. Until such a framework is in place and the
patient is in charge, our situation can only grow worse.”52
“We must consider the whole information system and not just infinitely
elaborate on the parts that interest us or fit into a given specialty. Patients
do not specialize, and they or their families are in charge of all the relevant
variables 24 hours a day, every day. They must be given the right tools to
work with…After all,
 They are highly motivated, and if they are not, nothing works in the
long run anyway,
 They do not charge. They even pay for help.
 There is at least one “caregiver” for every member of the
population.”53
The ensemble provides a “home base” for relationships and associations, as well as
their current and historical states. The ensemble is not just a medical record of the
transactions that have occurred to a given patient. It is a collaborative space that provides
an electronic means of dialog:
“The real value in the sciences, the arts, commerce, and indeed, one’s
personal and professional lives, comes largely from the process of
collaboration. What’s more, the quality and quantity of meaningful
collaboration often depends upon the tools used to create it.”54
MailMan Support of Ensembles and Transformations
The MailMan electronic communications system55 was an integral part of the
VA’s Decentralized Hospital Computer Program (DHCP) and DoD’ Composite Health
Care System (CHCS) in the 1980’s. Although only one of many modules installed, it
52
Weed, Lawrance, Knowledge Coupling, New Premises and New Tools for Medical Care and
Education, Springer-Verlag, 1991, p. 19
53
Weed, p. 13
54
Schrage, Michael, No More Teams!, Mastering the Dynamics of Creative Collaboration, Doubleday,
1990, p. 27
55
The author of this paper designed and wrote the original MailMan system in 1983.
41
was the most actively used program on both systems, sometimes accounting for 25% of
the total usage.
MailMan was designed to be more than just an electronic mail system. Its basic
messaging structure was built around the notion of a dialog within a community. Each
member of the community could see who else was participating, how much of the dialog
they had read, and when they had last used MailMan (as an indicator of how active they
were in the group). New messages were appended to the existing text as a continuous
dialog, and each time a reader rejoined the dialog, they would be presented with the
earliest unread portion of the dialog. There were simple forms of privacy and control,
defining who could include other recipients, and allowing participants to terminate from
future participation in the dialog.
The approach differed from traditional electronic mail in several ways:
1. Each message had a well-defined (and visible to all participants) community of
interest. The context for the discourse was within a known radius of trust. This is
different from an Internet news group, for example, in which those posting the
message do not know the identity or size of the recipient group. Talking in a
closed message with 3 close friends is a different context than participating in a
group of 3,000 in an open dialog.
2. Newcomers to the dialog were able to “catch up” with the history of the
conversation, being able to read the thread from the beginning.
3. Replies were collated within the dialog so that if there were multiple responses to
the dialog since the reader last participated, they appearrf as a single message (an
notification) to be read as a thread. Traditional electronic mail systems can
generate an exploding array of replies. For example, if someone sends a message
to 20 people, and they all reply, there will be 19 independent messages. Some of
these messages may have been made to the whole group (using the “reply all”), or
just a private response from the individual. Reconstructing who has said what,
and to what group, is a tedious process. Traditional mail systems do not maintain
this state information.
One could view MailMan as creating an ensemble around a topic. The ensemble is
the set of recipients of the message, and the sense of community it creates. The dialog is
the set of replies and interaction of the participants. The way that MailMan creates a
sense of community by tracking the state of the message is an example of how a
computer can be used to track the state of a transformation. These concepts are difficult
to communicate to those have not used MailMan. If they have only used “stateless”
electronic mail with no sense of community, they will not immediately appreciate the role
of a dialog manager within a known community.
Applications of Ensembles and Transformational Thinking
Ensembles and transformations can be applied to many areas within the VA as
well as other organizations. Some applications might be:
42
1. As a technology for Health e-Vet project. The approach to managing privacy and
trust in Health e-Vet could be made applicable to ensembles in general, beyond
just the personal health record.
2. The approach could be used to add a collaborative space concept to Health e-Vet,
forming communities of interest and associations within the context of the
personal health record.
3. Ensembles could be applied to the GCPR effort, allowing collaboration,
communication, and dialog across loosely associated record systems.
4. The approach could be used to provide an “associative layer” which resides on
top of existing web-based clinical applications. This would allow ensembles to
form in the context of specific clinical information. This might appear to be a
“sticky note” to the users. For example, a radiologist could attach an electronic
sticky note to an image, and include a number of others in the discussion. A
pathologist could contribute lab results interpretation, and the group could discuss
the issue as an ensemble, using a threaded dialog manager. Each member of the
ensemble could see who had seen what information; the dialog manager would
track each member’s current status in the dialog. Participants would see a
familiar yellow sticky note on clinical information; the technology underlying all
of this would transparent to them. The information brought together by the sticky
note is not necessarily integrated but rather associated as appropriate to the
context.
5. Ensembles provide a formal context for defining ownership and access to
information. Health information policy makers would have a finer granularity
and context within which to discuss ownership of information (and information
about information) than just the transactional model prevalent today.
6. Ensembles provide a platform for innovations in patient safety, education, access
to knowledge bases, and support groups.
7. Ensembles provide a foundation for introducing transformational thinking to the
VA. For example, clinical guidelines could be communicated within the context
of a transformation, and their application could be managed by software (not
unlike the dialog manager used in the “sticky note” concept above).
8. To serve as a platform for the Appreciative Inquiry (AI) conversations which are
under discussion in Vvaleo workgroup 2. The ensemble provides a natural
community of interest for discovering the positive core values that are part of the
AI technique.
9. The AI technique of generating positive discourse could be made scaleable to
reach a larger group of smaller ensembles.
43
Health and Positive Discourse56
Communication – what we say and how we say it – directly affects our health.
According to a Mayo Clinic study,
“People who expect misfortune and who only see the darker side of life don't
live as long as those with a more optimistic view of their circumstances, a
new study indicates.
Researchers, comparing results from a personality test taken by participants
more than 30 years ago with their subsequent mortality rates, found that
people who scored high on the pessimistic end of the scale had a 19 percent
greater risk of dying than people who scored high on the optimistic side.”57
“The manner in which people attempt to understand or explain the causes of
stressful or adverse life events – particularly the use of a pessimistic
explanatory style – can significantly undermine their psychologic and
physiologic functioning, or adversely affect the course of an illness”58
If someone invented a pill that could reduce mortality by 19%, it would be
heralded as a miracle drug. Simply changing the form of discourse from “pessimistic
explanatory style” to “positive discourse” can improve our health. Is there some way that
we can use modern communication technology to become have a population-wide health
impact?
Today’s technology gives us new ways to communicate across time or space, with
anonymity or global public exposure, and make access to information and knowledge
more egalitarian than ever before. We can form communities, exchange success stories
and discover serendipitous relationships in ways unthinkable a decade ago.
These communities are shaped by their participants, their organization, and the
metaphors with which they view themselves. If these metaphors are deficit-based, then
the community will evolve to fight against these deficits. If these metaphors are positive,
then the community will focus on improving its strengths.
56
Munnecke, Tom, Prepared for Business Enterprise Solutions and Technologies. Veterans Health
Administration Department of Veterans Affairs, August, 2000
57
http://www.mayohealth.org/mayo/0002/htm/pessimistic.htm
Maruta, Toshihiko, et al, “Optimists vs. Pessimists: Survival Rate Among Medical Patients over a 30year Period,” Mayo Clin Proc, 2000;75:140-143
http://www.mayo.edu/publication/proceedings/2000/feb/7502a1.pdf
58
44
The ripple effect of a leader's enthusiasm and optimism is awesome. So is the
impact of cynicism and pessimism. Leaders who whine and blame engender
those same behaviors among their colleagues. I am not talking about stoically
accepting organizational stupidity and performance incompetence with a "what,
me worry?" smile. I am talking about a gung-ho attitude that says "we can
change things here, we can achieve awesome goals, we can be the best."
Spare me the grim litany of the "realist," give me the unrealistic aspirations
of the optimist any day.
Gen. Colin Powell
The difference between negative and positive discourse is more than just looking at
a glass being half full or half empty. Each form of discourse has a self-reinforcing
quality about it. Those looking for problems will find more problems the deeper they
probe. Similarly, those looking for strengths will find more strengths the deeper they
probe. Asking a question can create what it is questioning.
Not Visible from
"Full" Perspective
Not Visible from
"Empty" Perspective
"Empty"
"Full"
Half Full is
equivalent to Half
Empty
The above diagram illustrates the fallacy of assuming that a glass “half empty”
and “half full” are equivalent perceptions. It is only in a limited range of discourse, the
overlapping sections of the ovals, in which the two are equivalent. This overlapping area
assumes that the system is linear – there is a fixed size glass, it is filled with an
incompressible liquid, and that we the formula for fullness is equal to emptiness minus
the amount in the glass.
However, if we move outside the overlapping region into the rest of the “full”
perspective, these assumptions break down. It is as if the glass itself gets larger as it fills
up. The glass gets larger faster than it is “filled,” creating a self-propelling feedback loop
that is not visible from the “emptiness” perspective. Similarly, the “empty” region
outside the overlapping region has the effect of making the glass smaller as the glass
empties. Dealing exclusively with the “empty” perspective eventually leads to a sense of
futility that it requires an ever-increasing effort to maintain an ever-decreasing
45
effectiveness. The intensity of this negative feedback loop makes the benefits of the
positive feedback loop difficult to appreciate.
If we substitute the “empty” side with “negative discourse” and “full” side with
“positive discourse” we can understand how this analogy can be used for thinking about
organizations and systems. Optimism and positive discourse have generative qualities
that feed on themselves.
Appreciative Inquiry
David Cooperrider of Case Western Reserve University developed the concept of
Appreciative Inquiry (AI) as a form of organizational change. He defines AI as the:
“search for the best in people, their organizations, and the relevant world
around them. In its broadest focus, it involves systematic discovery of what
gives “life” to a living system when it is most alive, most effective, and most
constructively capable in economic, ecological, and human terms. AI
involves, in a central way, the art and practice of asking questions that
strengthen a system’s capacity to apprehend, anticipate, and heighten
positive potential. It involves the mobilization of inquiry through the crafting
of the “unconditional positive question” often involving hundreds or
sometimes thousands of people.”59
His approach is based on the assumption that the process of inquiry can create what it
is questioning. A manager asking “Have we stopped thinking about pink elephants?”
causes the organization to think and talk about pink elephants. Similarly, attempts to
“stop sexual harassment in the workplace” through classes and education can have the
effect of increasing the incidence of sexual harassment complaints. If we look at
organizations as problems to be solved, we find an ever-increasing number of additional
problems. This is the realm of deficit discourse.
Flipping the questions to positive discourse, our questions seek strength and
positive interaction. Instead of “how do we ignore pink elephants?” the question
becomes, “How can we focus our attention on accomplishing our goals?” Instead of
fighting sexual harassment, the question becomes, “When have we had positive crossgender quality work relationships?”
Cooperrider lists five principles of appreciative inquiry:

Constructionist principle: the way we know is fateful. If we choose to
understand a system according to its deficits, we are not only limiting our ability
to understand its positive attributes, but we are creating additional deficits.

Principle of Simultaneity: Changes begin the moment we ask the question.

Poetic Principle: Organizations are an open book, creating themselves according
to the metaphors they choose in internal discourse.
59
Cooperrider, David, et al, Appreciative Inquiry, Rethinking Human Organization Toward a Positive
Theory of Change, Stipes Publishing, 2000, p. 6
46

Anticipatory Principle: Deep change is stimulated in an organization’s active
images of the future.

Positive Principle: The more positive the question, the greater and longer-lasting
the change.
He lists several ways in which positive images can create positive action:

Placebo effect. A person or organization’s expectation has a powerful
influence on the outcome of an interaction.

Pygmalion effect. Research has repeatedly shown that the way that
teachers were introduced to their students has dramatically affected a
student’s progress. Those who were randomly introduced as high
performers outperformed those who were of the same skill level, but
introduced as low performers.

Imbalanced “inner dialog.” People and organizations who focus
exclusively on negative discourse will have lower performance than those
who maintain a more positive balance.
Deficit Discourse in Health Care
There are many examples of deficit discourse in the health care industry. For
example, a recent issue of Health Affairs Journal spoke of deficits by people’s race,
immigrant status, mental health, and substance abuse. Efficiency was defined as “low
cost.” The ability of health care consumers to understand more complete information
was questioned. One physician spoke of his patients: “little did they know that they
“belonged” to their IPA (which they had never heard of) – not their physician and
certainly not themselves.”60 The predominant metaphor was that health was a scarce
resource to be allocated according to supply and demand as well as regulation and
enforcement, rights and entitlements.
Psychologist Kenneth Gergen sees deficit discourse as a contributor to the growth
of a profession:
“Interestingly, this dramatic expansion of the identified disorders roughly
parallels the growing numbers of mental health professionals…we find
ourselves facing what appears to be a cycle of progressive infirmity: consider
the phases (1) as mental health professionals declare the truth of a
discourse of dysfunction, and (2) as this truth is disseminated through
education, so do we come (3) to understand ourselves in these terms. (“I’m
just a little depressed.”) With such an understanding in place, we will (4)
seek out mental health professionals for a cure. As cure is sought, (5) so is
the need for mental health professionals expanded. And (6) as the
60
Project Hope, Health Affairs Journal, July/August 2000
47
professional ranks expand, so does the vocabulary of mental disorder
prosper.
Is there a limit to the dysfunctional disciplining of the population? I recently
received an announcement for a conference on the latest research and cure
for addiction, called, “the number one health and social problem facing our
country today.” Among the addictions to be discussed were exercise,
religion, eating, work, and sex. If all these activities, when pursued with
intensity or gusto, can be defined as illness that require cure, there seems
little in cultural life that can withstand subjugation to the professions.”61
Clearly, there are problems that must be dealt with directly in the health care
process. At the same time, however, we need to strike a balance between positive and
negative discourse.
Technology to Support Positive Discourse
Positive discourse can have dramatic effects on our health. For example,
Spiegel62 reported that metastatic breast cancer patients who were randomly assigned to a
professionally led support group not only enjoyed a higher quality of life than similar
patients not in a support group but also lived twice as long, an average of 18 months
longer.
The Internet provides several key capabilities that can be used to support positive
discourse for health.



Flexible communications
Scalability
Generative spaces
Flexible communications.
Participants in cyberspace communications do not have to be close in space or
time. Messages can be entered and retrieved as needed by the sender and receiver.
Participants in a community are not necessarily there all the time; they can come and go
according to their own needs. Information and knowledge that can be expensive to
generate can be communicated at very low cost.
Scalability.
Cyberspace is not physical; it is nowhere and everywhere at the same time.
Furthermore it is scalable. It can be very small and cozy, or large and open to many
participants. There is no inherent limitation on the size of the space, nor its characteristic
size. For example, Amazon.com may be the “world’s largest bookstore,” but repeat
customers are provided with a personalized list of suggested books, based on their
personal purchasing history as well as customers similar to them. The bookstore is large
and comprehensive as well as cozy and personal. In the same way, Internet technology
61
Gergen, Kenneth, Invitation to Social Constructionism, Sage Publications, 1999, p. 40
D. Spiegel, J.R. Bloom, et al. "Effect of Psychosocial Treatment of Survival of Patients With Metastatic
Breast Cancer." The Lancet (October 14, 1989): 888-891
62
48
can create a large and comprehensive space for health and information, as well as a cozy
and personal space for individual needs. Technology can be used to blend these together
in an innovative manner, free from the constraints of physical space and physical
meetings. The benefits of positive discourse are scalable – that is, the greater they are
used, the greater the motivation to do more.
Generative Space.
Cyberspace differs from physical space in critical way. Cyberspace does not “fill
up” as does physical space. When a store moves into a shopping mall, it shrinks the
space available for other stores. When a web site goes online, rather than taking up
space, it increases cyberspace. In this sense, it is generative. The more people who join
the space, the larger it becomes.
It is possible to think of health as a generative space. The healthier people
become, the healthier everyone else becomes. The more people enter the space, the larger
it becomes. Health becomes an open, inclusive concept, generating ever more interest in
an ever-broadening spiral. People becoming healthier do not fill up the health space any
more than new web sites fill up cyberspace.
Positive Metaphors for Health
The World Health Organization proposed that health transcends the mere absence
of disease and should be viewed more broadly as a state of complete physical, mental,
and social well-being.63 An Institute of Medicine committee expanded the WHO
definition of health as follows: “Health is a state of well-being and the capability to
function in the face of changing circumstances. Health is, therefore, a positive concept,
emphasizing social and personal resources as well as physical capabilities. Improving
health is a shared responsibility of health care providers, public health officials, and a
variety of other actors in the community who can contribute to the well-being of
individuals and populations”64
Peter Drucker’s summation of management is to “create ways to aligning
strengths while making weaknesses irrelevant.” How can we do this for managing our
health? In order to make this shift, we need new metaphors. One approach is to think of
the VA as an entity that supports health transformations, building on the positive concept
of health.
100 Million Health Transformations
What if the VA imagined itself as an organization to support 100 million
simultaneous health transformations? These transformations would be personalized to
the 26 million individuals or groups that make up the VA population. Each
transformation would occur within its own ensemble, a community of people, resources,
and agents focusing on a common purpose. Ensembles could be as small as a
63
World Health Organization, Constitution of the World Health Organization, Geneva, Basic Documents,
1994
64
Institute of Medicine, Improving the Health in the Community: A Role for Performance Monitoring,
Washington, DC, National Academy Press, 1997
49
consultation about a single person’s problem. Or, they could be as large as a nation-wide
concern, for example, all those interested in the Persian Gulf Illness.
Thinking of health as transformations occurring within ensembles allows us to
rethink health and how it is supported65. The concept is a fertile foundation for
innovative thinking about health:

It introduces new notions of scale to health. Web technology provides an
infrastructure for connectivity and mass personalization unthinkable just a decade
ago. Systems can be designed to support massive numbers of participants at a
relatively low cost.

It makes self-organization feasible. People can discover their own resources for
managing their own health transformation. Providers can direct patients to
ensembles and resources as appropriate.

Things that can be reduced to bits of information can be replicated and
communicated at very low cost. One expert’s advice can be captured once, and
communicated many times.

It puts a new emphasis on patient self-efficacy. Patients will find themselves
more responsible for their own health.

It introduces new notions of management and control. VA cannot be expected to
manage 100 million things simultaneously. Rather, the transformations must
become self-organizing.
This concept raises other issues:
65

It creates new problems of information overload, access, and ability of Veteran’s
to understand and communicate in the information era. This requires innovation
to allow access, train assistants and family members, and publicize the process.

How are these transformations infused with appropriate clinical expertise and
medical knowledge?

What are the constraints limiting these transformations? How do we protect
against fraud and quackery?

How do we insure that transformations occur are as safe as possible?

How do we configure medical knowledge and research to maximize its benefit to
this massive number of transformations?
http://www.munnecke.com/papers/D16.doc
50
Example of Appreciative Health Inquiry
The appreciative inquiry model could be introduced directly into the clinical
process:
Dialog
Dr (at beginning of visit): “Tell about
the time you felt most healthy and
alive?”
Dr. listens to Patient response
“How can we use that vitality to help us
today?”
Dr. refers to these strengths in the
course of the exam, either as
reinforcing chit-chat or a foundation for
additional health care instructions
At conclusion of visit: “What are you
going to do to improve and maintain
your health until we next meet?”
Strengths and expectations noted on the
medical record for future
communication.
Effect
Puts the patient in an upbeat mood,
opens up positive dialog, establishes
positive rapport, begins placebo
process, lets patient know that they are
expected to participate in this process.
Opens door to additional conversation,
but not simply in the “complaint” mode
of discourse.
Asks patient to think of ways of helping
themselves; draws on personal
strengths, transfers physicians authority
and trust to the individual.
Establishes shared meaning during the
visit, grounds instructions in a positive,
optimistic context which the patient can
understand and relate to.
This places the burden on patients to
think about their own health process,
and the instructions given during the
visit. It introduces a positive
expectation in patients – they can do
something on their own to improve
their health. It confirms the instructions
given during the visit, and opens up a
dialog for further discussion
This will establish positive rapport in
future visits. Knowledge that physician
will be asking about their health process
will encourage patients to adhere to
them more aggressively.
Patient Safety Success Dialog
An Appreciative Inquiry approach to the patient safety issue would be to create a
dialog around successful instances of activities that improved patient safety. Sample
questions to medical professionals might be:

In your career as a health care professional, when have you felt most productive
and successful in creating an environment of patient safety?
51

Imagine you were to fall asleep and awaken 10 years from now. The health care
system had changed to become much safer. What would that system look like?

What are the ways in which we can improve the safety of delivery of health care?
On Line Support Groups
There are a profusion of on-line support groups dedicated to specific
communities. One group is called The Healing Exchange Brain Trust, whose mission
statement is:
Our nonprofit mission is to provide, promote, and improve communication
opportunities and tools for people who are personally affected by or who
professionally treat or study localized neurological disorders and subsequent or
related health care concerns.
T.H.E. BRAIN TRUST Vision is threefold
1.
The communication vehicles created, supported, offered or endorsed by
T.H.E. BRAIN TRUST are intended to enable, encourage and empower local
and international exchange among Survivors, their families and supporters,
health professionals and researchers.
2.
The group experience will become a new type of health resource -- a
collected wisdom -- which should be conveyed to the broader health care
community and the public in order to foster acceptance, understanding and aid
for persons coping with neurological abnormalities and to increase public
awareness of and to further develop innovative resources for anyone needing
them.
3.
T.H.E. BRAIN TRUST seeks to emphasize how health care and the
human spirit unite towards achieving healing and well being. We seek to
recognize participants in the health care process as
patients/survivors/families/consumers and providers/professionals/caregivers
but most importantly seek to unite these groups by embracing the humanity of
all.
One of their primary activities is a mailing list of about 1,000 people called BRAINTMR.
Some examples of how BRAINTMR is used are: 66
66

For patients and families dealing with the same tumor type to "meet"

To find out WHO is doing WHAT brain tumor research

To address emotional aspects of patients' brain tumor treatment
http://www.braintrust.org/services/support/braintmr/
52

To discuss the impact of brain tumors on individuals, society and the practice of
medicine

To discuss other intracranial malformations (such as the AVM)
Over time, other groups have formed for more specialized communities. For
example, The Brain Trust web site introduces group dedicated to Adult
Ependymoma:
“The Adult Ependymoma Group is currently a group of approximately fifteen
adults, including patients, caregivers and relatives. The size of this group is
consistent with the rarity of ependymomas in adults. The "advantage" to the
size of this group is the incredibly close and powerful bond the members
have formed. Currently the group serves as an emotional and medical
support system for one another. The members have expressed numerous
times how invaluable this connection is to their survival in the world of brain
tumors.”67
The advantages to online support groups are many:










67
They are relatively inexpensive to set up and operate.
They can be self organizing
They are scalable. They can serve small or large groups, depending on the needs
of the community.
A little knowledge goes a long ways. A single subject matter expert can
participate in the group to provide professional input and interpretation to the
group.
They can be accessed 7 days a week, 24 hours per day.
They can deal with very broad or very narrow topics, as appropriate to the group.
They can be as open or closed as necessary.
They can be used to support VHA’s goal to build healthy communities. At very
low cost, online support groups sponsored by VHA and staffed by VHA subject
matter experts could be opened to the community in general.
They could be a conduit to medical research. VA researchers in specialized
diseases or conditions could be linked directly with support groups consisting of
those with a special interest in that topic.
They could provide a creative outlet for VHA employees wishing to leverage their
knowledge and education to a broader audience than that constrained by physical
office meetings.
http://www.braintrust.org/services/support/othergroups/index.html#adultependy
53
Health and the Devil’s Staircase68
René Dubois likens modern medicine to a wild west thriller:
“In the crime-ridden frontier town the hero single-handedly blasts out the
desperadoes who were running rampant through the settlement. The story
ends on a happy note because it appears that peace has been restored. But
in reality the death of the villains does not solve the fundamental problem, for
the rotten social conditions which had opened the town to the desperadoes
will soon allow others to come in, unless something is done to correct the
primary source of trouble. The hero moves out of town without doing
anything to solve this far more complex problem; in fact, he has no weapon
to deal with it and is not even aware of its existence.69” (Italics added)
There are many heroes in today’s healthcare environment, and there are also
severe underlying problems that are being ignored. One manifestation of this is the
exploding complexity of our systems. We are gaining ever more precise understanding of
an exploding amount of knowledge. The yardstick by which we measure the medical
universe is shrinking to ever more precise dimension.
As levels of precision and specificity rise, so does complexity. Modern society is
driven by a lust for precision that in many cases outstrips its needs. The Dow Jones
Industrial Average is broadcast with a precision of seven significant digits. Colleges
calculate grade point averages to four, in spite of what students are taught about precision
in their science classes.
President Clinton, in his January, 2000 State of the Union speech, said that
Americans, based on their genetic sequences, were 99.9% the same. Had he chosen to
use amino acids as the yardstick of similarity, he could have claimed 100%. Had he
chosen hair color, the number may have dropped to the low teens. Had he chosen
fingerprint patterns, he could have made the case for 100% uniqueness. The same
species viewed with different yardsticks reflect wildly different comparisons.
Health and our healthcare system are subject to the same problems of scale and
perspective. The same thing, viewed with different yardsticks, can have wildly different
results.
One way to address this problem is to address the notion of complexity as topic in
itself. Like the gunfighter in Dubois’ allegory, those involved with the heroic solutions to
healthcare problems may not have all the weapons or tools they need, nor even be aware
of its existence. Actions taken to cure an individual or an entire healthcare system may
fix one problem but exacerbate others. Complexity feeds on itself, each iteration
contributing complications for the next.
Murray Gell-Mann, Nobel laureate in physics for his work in discovering the
Quark, speaks of this problem:
“We need to overcome the idea, so prevalent in both academic and
bureaucratic circles, that the only work worth taking seriously is highly
68
Munnecke, Tom, Business Enterprise Solutions and Technologies, Veterans Health Administration,
Department of Veterans Affairs, Jan 2000
69
Dubos, Rene, Mirage of Health: Utopias, Progress, and Biological Change, Harper, 1959, p. 162
54
detailed research in a specialty. We need to celebrate the equally vital
contribution of those who dare to take what I call “a crude look at the
whole.”70
The Devil’s Staircase
Mathematicians speak of a construct called the Devil’s Staircase.71 Viewed from
a distance, the staircase looks like a rough set of steps. However, it has an insidious
property in that the closer we look at the curve, the more steps it has. In fact, as we look
at infinitely small sections of the staircase, we find infinitely many steps.
This provides a rich metaphor for looking at systems. The quest for ultra fine
precision can cause us to sink into the devil’s staircase, defeating our ability to have a
“crude look at the whole”.
The notion of scale took a revolutionary turn with Benoit Mandelbrot’s discovery
of fractals in the 1970’s. As a fractal object is magnified, ever finer features are revealed.
The shapes of the smaller features are similar to the shapes of the larger features.
Notions of dimension that have been taught since the time of Euclid no longer apply.
Imagine that we are trying to measure the length of the coastline of Great Britain.
If we follow the edge of the island on a map with a dividers set to 1000 km, we will find
one length. If we set the dividers to 100 km, we will measure a longer length, because
the segments spanned by the dividers measure greater detail. If we move to progressively
smaller scales to 10, 1, .1, .01, .001, .0001 km, etc. we will find a progressively longer
coastline. The length of the coastline varies with the length of the yardstick we use to
measure it:
“Typical coastlines do not have a meaningful length! This statement seems
to be ridiculous or at least counter-intuitive. An object like an island with
some definitive area should also have some definitive length to its
boundary.”72
The length of the coast is dependent on the scale with which we measure it. This
is different than understanding objects according to the geometry of Euclid.
If we were measuring a coffee cup, the smaller the scale with which we measure,
the more accurately we would know its circumference. We could take a number of
measurements, then take the mean in order to get even more accuracy. Measuring a
coffee cup and measuring a coastline, it turns out, are extremely different problems.
The differences between the coffee cup and a coastline are not just a mathematical
curiosity – they illustrate a fundamentally different way of understanding the world.
There are far more fractal problems out there than first meets the eye. However, the
intellectual paraphernalia we have developed over the past centuries is based on the
assumption that we are able to use the coffee-cup style of metrics.
The yardstick (and therefore, scale) with which we view a problem has profound
effects on what we see. In many cases, the smaller the yardstick, the greater the problem.
Yet we have an intellectual ethic that respects only ever-finer investigations at only a
70
Gell-Mann, Murray, The Quark and the Jaguar, Adventures in the Simple and the Complex, W.H.
Freeman and Co, 1994, p. xiv.
71
Peitgen, Heinz-Otto, et al, Chaos and Fractals, New Frontiers of Science, Springer-Verlag, 1992, p.
220
72
Peitgen, et al, p. 184
55
specific scale. Like Dubois’ wild west gunmen, we are unaware of entire cascades of
problems which occur outside of scope of a specific scale of thinking.
We have precious few intellectual weapons to address these multi-scale problems
after the single scale gunfighters have left town.
The Notion of Intrinsics
One way to attack the concept is to imagine a system as being composed of many
layers. The bottom scale addresses the problem at the smallest scale, and each
succeeding layer deals with the problem at a larger scale. One sequence of layers for
health may be:
1.
2.
3.
4.
5.
6.
7.
8.
9.
10.
Gene
Cell
Immune System
Organ
Individual
Family
Community
Nation
Race
Species
Rather than look at a problem at only a single layer, we drill down through all the
layers simultaneously. Things that connect through the different layers can be called
intrinsics. Intrinsics are scale-independent properties which are found at many or all of
the scales at which a system operates.
For example, vitality can be viewed as an intrinsic of health. We can speak of
vitality at many different scales: of a cell, organ, person, family, community, nation, race,
or species. This perspective does not refute the biologist that studies the cell or the
sociologist that studies community. Nor does it seek to “integrate” the fields of biology
and sociology.
Understanding systems through scale-independent intrinsics is fundamentally
different than traditional “interdisciplinary” approaches. Intrinsics are based on the
concept of self-similarity across scale, whereas intellectual disciplines arise from
examining a system at a specific scale. The integration of mutliple, scale specific
disciplines triggers a “scale crunch” where the two specialists struggle to retain their
scale-specific understanding while simultaneously interacting with others.
These specialists have already sunk into the devil’s staircase. Attempts to make
their positions more explicit only drive them deeper into the very problem they are trying
to solve.
Scale-specific disciplines are often linked to notions of predictability,
repeatability, objectivity, and assumptions of linearity. They narrow their scale of
examination, excluding “externalities,” “outliers,” and “non-normalized” information.
They assume Gaussian distribution for their fields of study, and seek to define causal
relationships within these confines.
Intrinsics, operating simultaneously at all scales, are not easily boxed into singlescale thinking. They create a cascade of interaction, acting at many scales
56
simultaneously. Like the coastline of Great Britain, any single yardstick we use to
evaluate and understand a specific cascade will only deal with a partial slice of reality.
The cascade of vitality that engulfs our daily world is easily seen on a visit to a
park on a spring day. The infectious enthusiasm of children playing, the appearance of
new flowers and buds, the young couples entertaining thoughts of the next generation,
and the older generation watching it all are all manifestations of William Blake’s “To see
the world in a grain of sand.”
While poets and mystics revel in such observations, we have a scientific tradition
that has difficulty dealing with cascades of activities at multiple scales, happening
simultaneously.
Consider, for example, the cascade of interactions between a nursing mother and her
infant. By analyzing mother’s milk at the chemical level, we can recreate it in a stable,
easy-to-mix formula that can provide a large percentage of the nutrients found in
mother’s milk. We could even quantify the similarity between the two, for example, that
formula contains 98% of the nutrients found in mother’s milk.
This approach makes several assumptions:
1. That the scale at which we are analyzing mother’s milk is appropriate. For example,
we could say that the formula had exactly the same ratio of amino acids as mother’s
milk. Although this ratio could be proven exactly true, the net effect of the
concoction would likely have little nutritional effect.
2. That there is some yardstick by which we can claim 98% complete. Is this 98% by
weight, volume, active ingredients, or other measure?
3. That this yardstick is linear – we can add together components together to get 100%.
4. That we understand the missing 2% of the formulation. Are these missing ingredients
something vital to the infant, even if in trace quantities?
5. That there is an “average” mother’s milk that serves as the basis from which the 98%
analysis is completed.
Let us examine the system from another scale – the dynamic interaction between
mother and infant. Nursing is a bidirectional process, by which the baby receives
nutrition, emotional support, comfort, warmth, touch, massage, cooing sounds, heartbeat
sounds, love, and bonding with the mother. Other than the specific transfer of chemical
nutrients, the mother receives much of the same from the baby.
The mother may have feelings such as reassurance that she is a worthy mother, a
sense of being needed, a sense of wonder at the mysteries of childbirth, hope for the
future, happiness that her labor and hard work to bring a child into being was worth it,
resolution of fears and anxieties, and an array of other emotional feelings. This cascade
of interaction is far removed from the chemical process of providing nutrients to her
baby.
This multi-scale perspective negates many of the assumptions of the single-scale
chemical/nutritional analysis:
1. The mother and the baby are interacting with each other simultaneously at many
different levels. Communication is no longer a one-way process based on average
nutritional content, as viewed by chemical/nutritional yardsticks.
57
2. There is no yardstick by which to measure the mother/infant nursing dialog. We
can not claim that a mother is receiving 74% of her sense of wonder or the baby
98% of its emotional support from a particular nursing session. Even more
remote is the possibility of aggregating these factors into an overall quantity, to
claim that a nursing session was 74% successful.
3. There is no way to characterize an “average” nursing process. Each mother and
each infant are different, and each nursing session has its own context.
This scale of thinking is difficult to handle from a scientific, rational point of view.
Management textbooks teach, “If you can’t measure something, you can’t achieve it.”
Science demands objectivity, an observer outside the system being measured who is free
of investigator bias. It expects falsifiable hypotheses, which the objective observer could
disprove according to scientific methods.
Nature, however, is hampered neither by the limitations of analysis nor the scientific
method. Nursing has been experienced successfully by billions of mothers without any
rational explanation or analysis.
The Yardsticks of Health
In the field of health, there is an intimate relationship between yardsticks and their
effect on the systems we examine. What are these yardsticks, and are they fractal in
nature?
Some of the areas in which fractal dimension has been measured are:
-
Pulmonary hypertension
Surfaces of proteins
Surface of cell membranes
Shape of herpes simplex ulcers in the cornea
Growth of bacteria colonies
Islands of types of lipids in cell membranes
Dendrites of neurons
Blood vessels in the eye, heart, and lung
Blood flow in the heart
Textures of radioisotope tracer in the liver
Action potentials from nerve fibers
Opening and closing of ion channels
Vibrations in proteins
Concentration dependence of reaction rates of enzymes.73
Fractals are not isolated to the dimension of space, but that of time as well:
“The fractal concept can be applied not only to irregular geometric or
anatomical forms that lack a characteristic (single) scale of length, but also
to complex processes that lack a single time scale. Fractal (scale-invariant)
processes generate irregular fluctuations on multiple time scales, analogous
to fractal objects that have wrinkly structure on different length scale.
73
Liebovitch, Larry S., Fractals and Chaos Simplified for the Life Sciences, Oxford University Press,
1998, p. 69.
58
…complex fluctuations with the statistical properties of fractals have not only
been described for heart-rate variability but also for fluctuations in
respiration, systemic blood pressure, human gait, and white blood cell
counts.74”
Goldberger goes on to link the absence of the fractal cascade to the disease process:
“The antithesis of a scale-free (fractal) system – i.e., one with multiple scales
– is one that is dominated by one frequency or scale. A system that has only
one dominant scale becomes especially easy to recognize and characterize
because such a system is by definition periodic – i.e. repeats its behaviour in
a highly predictable (regular) pattern..
The paradoxical appearance of highly periodic dynamics in many disease
states (disorders) is one of the most compelling examples of the notion of
complexity loss in disease. Complexity here refers specifically to a multiscale, fractal-type of variability in structure or in function. Many disease
states are marked by less complex dynamics than those seen under healthy
conditions. This decomplexification of systems with disease seems a
common feature of many diseases, as well as aging.
When physiological systems become less complex, their information content
is degraded. As a result, they are less adaptable and less able to cope with
the exigencies of a constantly changing environment. Remarkably, the
output of many severely pathological systems has a nearly sinusoidal
appearance. An example is the sinus-rhythm heart-rate variability
sometimes seen in patients with severe congestive heart failure, or with the
fetal distress syndrome.75”
If health is a fractal concept, then our attempts to understand it using single-scale
metrics rob us of our understanding of the full cascade of interactions. In the same way
that congestive heart failure can create a perfectly orderly sinus-rhythm heart waves, our
attempts to control our health care system with perfectly orderly regulations and
standards may indicate pathology. The richness and the generative cascade of multi-scale
understanding is a measure of robustness and vitality. This is the weapon that our
gunslingers are missing.
Goldberger, Ary, “Non-linear dynamics for clinicians: chaos theory, fractals, and complexity at the
bedside,” The Lancet, May 11, 1996, Vol 347, No. 9011, p 1313
75
ibid, p. 1313
74
59
Personalizing Health76
One of the many complaints directed at large health care organizations and
government agencies is that they are impersonal bureaucracies. Patients complain that
“the system” does not meet their needs. It goes too far in some ways, yet not enough in
others.
Employees of these organizations have similar complaints. They feel frustrated
with the rules, and feel limited in their ability to take initiative to serve their patient
population. They, too, blame “the system.”
This paper proposes an alternative – personalization. It reframes the notion of the
system to be “pro health” rather than “anti disease.” The notion of health is a highly
personalized matter, not simply an average of aggregates.
Depersonalization
“Bureaucracy develops the more perfectly, the more it is dehumanized…the
professional bureaucrat…is only a small cog in a ceaselessly moving
mechanism which prescribes to him an essentially fixed route of march.”77
The common thread connecting all of these problems is depersonalization – the
notion that the individual is a passive object to be acted upon by the system. The doctor
knows health, it is the responsibility of the patient to be compliant and receive the
benefits. As Philip Howard says of the spiral of our culture into ever more legalistic and
bureaucratic control: “One of the dreadful curses is that we are making diversity illegal.”
The common solution to these problems is personalization – the notion that the
individual is responsible for their own success. The purpose of the system is to enhance
that success, not control it or limit with expectations that others are responsible. It
recognizes and supports diversity – the personal health context of the individual
The World Wide Web is a fascinating case study in this process. We need to look
beyond the technology and gadgets of the web – one pundit described our current
fascination with web technology as like going to a movie and staring at the projector. We
are experiencing a profound shift in how we deal with large scale, complex systems.
There is no CEO to the web, no central authority, no single starting point. Users must
create their own center – they are personalizing the web from their particular point of
view. They control the success or failure of web sites by simply clicking on what
interests them. Sites that get many clicks thrive; those that do not, fade away. Such is
the law of the web jungle – consumer attention drives the evolution of the web.
It is possible to imagine a similar dynamic in health, driven by the notion of
personalization. Those who are able to deliver their information, goods and services in a
manner that meets the personal needs of the individual will thrive. Those who do not will
fade away, replaced by those who have met the personalization needs of the population.
76
Munnecke, Tom, Veterans Health Administration, May, 2000, Department of Veterans Affairs
77
Howard, Philip K, The Death of Common Sense, How Law is Suffocating America, quoting German
Sociologist Max Weber at the turn of the century
60
Depersonalization is not just a consumer/patient problem. Those employed by the
health care industry feel the same way – that the system is controlling their decisions and
freedom. It is not allowing them to be the scientist, healer, or care giver that they sought
when they started their career. They have the same needs for personalization as the
patients they serve. They suffer from the same depersonalization as the patient.
Viewing health from a personal point of view is radically different than from the
point of view of the “system.” This inversion of perspective, however, is key to
understanding and transforming the health care system. The dynamics of the current anti
disease system is much like trying to get out of a hole by digging it deeper, and
measuring progress by how much dirt is being thrown about.
There will be those who believe that the average person is not capable of making
their own health decisions. Imagine this attitude at the time of Gutenberg, “Why do we
need so many books? No one can read them.” They would have failed to see the
literature/literacy spiral that the printing press created. They would have been fearful that
lay people would be interpreting the Bible directly, without interpretations by priests.
So it is with health information. The web is feeding the health literacy/literature
spiral, with or without intervention or the control of the medical profession. Authority
which used to be assigned to the system is being replaced by communication, as health is
personalized to the individual.
This transition is appearing in the market today, under the rubric of “e-health” and
“e-medicine.” A RedHerring.com message describes this, in the context of the successful
IPO of the DrKopp.com web site:
"Drkoop.com is the opening salvo for a new industry -- e-medical," says Irv
DeGraw, research director of financial information site Stockstowatch.com.
He expects this to be a top sector next year.
I once helped an elderly aunt by replacing an old dial-style telephone with a
lighted, large button model. She grew up in the era when telephones were the property of
the telephone system, not to be touched by homeowners. She giggled when I showed her
the new telephone, as if we were doing something illegal. I could never fully convince
her that times had changed, and customers were free to buy and install their own
telephones.
A similar attitude has been instilled by the health care industry. It is almost as if
your health is the property of your provider, a benefit provided to you according to the
rules and regulations of the system. Like my aunt who was never quite comfortable with
the notion that she owned her own phone, we have created a system in which people do
not believe that they are responsible for their own health. The convergence of e-health
and the Internet may trigger a major shift in the public’s thinking.
A Foundation for an Epidemic of Health
Jonas Salk concluded that the solution for our health care crisis was to create and
epidemic of health.78 This is a rich metaphor for thinking about health, rather than just
Appendix A is a report of a meeting held in Washington on May 3, entitled, “Creating an Epidemic of
Health.”
78
61
“anti-disease.” It also forces us to consider just what is meant by the concept of health,
and how the system supports it.
The explosive growth of the web provides a role model for this kind of process.
The web began very simply, and evolved according to a fitness function within a set of
constraints. The fitness function for success was very simple, that which people paid
attention to, thrived.
The dynamics of the epidemic of health can recapitulate the web experience in
many ways, personalization being a key factor:
Attribute
Initial Conditions
Web
URL, HTTP, HTML
Constraints
Internet Protocol
Fitness Function
Emergent Properties
Attention
Yahoo!, Amazon.com, eBay
Epidemic of Health
Connectivity, Interest in
Health, Mutuality
Privacy, Safety, Public
Health
Personalization
???
Personalization is to the epidemic as attention is to the web. Just as successful
web sites drew attention, successful health entities will offer personalization –
information and knowledge in the context of the individual.
Personalization has a rich variety of meanings. We see it emerging on the web as
“My Yahoo!” type of sites, where individuals are able to customize their web site. It is
also a reaction and a repair of what was caused by depersonalization – that people are all
just cogs in the machine. Trust the system to take of you.. Rules and regulations are
responsible for proper functioning, your role is to be a passive participant. Your box on
the organization chart defines your freedoms and responsibilities. If things go wrong, the
system needs to have additional rules and regulations to fix it. If there is a failure to
communicate, more authority and policing will compensate for it.
We have turned health into a “market,” where “consumers” have “benefits” given
to them by health care “providers,” allocated according to the laws of supply and
demand. Taxes, employer contributions, and individual’s money are all pooled in a
reservoir, from which they withdraw their health care.
Consumers expect their providers to take care of their health, not unlike the way
that they expect a mechanic to take care of their car. If something goes wrong,
malpractice lawyers will step in, and on a contingency basis, will retrace all of the steps
leading to the wronged action.
But is this what health is about? Is health something that can be bought and sold
according to supply and demand? Is health really a zero sum process, where one person’s
increase in health demands someone else’s corresponding decrease? What exactly is the
market allocating?
Do the uninsured not have health? When they read, “see you doctor before
beginning an exercise regimen,” should the fact that they cannot afford a doctor keep
them from exercising?
62
“Despite the superb achievements of medicine, our best hope for a healthy
life is not medical care, but self-care. Current medical evidence, which
implicates violations of lifestyle, environment, and diet as the driving forces
in chronic disease, shows that many of us are not conducting our lives in a
healthy way. Health as subjective behavior is ignored in favor of health as
an objective entity that the designated expert (the doctor) ensures and
maintains…This abdication of responsibility undermines the development of
healthy attitudes and healthy behavior.”79
Paradoxical Control
It is possible that the attempt to control something will create more of the very
thing it is attempting to stop.
For example, imagine that we want to make sure that people do not think of pink
elephants. We pass anti-pink elephant promotion laws, and have regular surveys to see
what proportion of the people are not thinking about pink elephants. When these surveys
show an alarming increase in pink elephant thinking, we decide to “declare war on pink
elephant thinking” with billboards, etc. Everything we do to prevent pink elephant
thinking seems to make it worse.
There are parallels between this analogy and the health care industry. We think of
health as fighting disease, rather than accentuating health. Responsibility is shifted to the
system, not the individual, and it is defined from the system’s perspective, not the
individual’s context.
If we take one extreme of the disease-prevention model – defeating death - we
would create a system in which the entire US population would end up on life support
systems. If we take the other end – minimize costs – we would spend nothing because
every one is going to die anyway. If we dichotomize the industry in this manner, we are
faced with a choice…we spend X percent of our resources on defeating death, and 100X% minimizing costs. The decision descends to “what is the appropriate value of X”
rather than challenging the fundamentals of the situation. I think that we need to ask,
“how do we maximize the vitality and health of the American public?”
We need to think about “pro-health” metrics rather than “anti-disease.”
Unfortunately, nearly every measure of quality and control in use today is based on
disease, diagnosis, and aggregation, rather than health, self efficacy, and personalization.
The challenge is how to bring long term, goal oriented, transformational values
into the short term, immediate transactional metrics of our current organization. We need
a number that “bottom line” thinkers can use to manage and control their organizations.
This kind of transformational information system is not generally available. Ecologists
speak of full cost pricing, in which the full environmental costs of goods and services are
priced into the sales transaction.
The RealAge approach (http://www.realage.com) is a transformational metric.
Individuals who take the questionnaire are able to calculate the difference between their
chronological age and their health risk adjusted “real age.” Thus, the transformational
value of lifestyle modifications and behavioral modifications are reflected in the
79
Beasley, Joseph D, MD, The Betrayal of Health, The Impact of Nutrition, Environment, and
Lifestyle on illness in America, p 238
63
individual’s age. These age differentials can used as organizational metrics, allowing
traditional aggregation and analysis.
Health Management = Wealth Management?
Consider developing the US Department of Wealth, universities devoted to Wealth
Care Sciences, professional wealth care providers giving wealth back to their customers,
and the wealth care insurance industry. People would be advised not to spend their
money until they got approval from their wealth care provider. The exploding
complexity of the US wealth care industry would trigger a call for standardization, so that
the wealth care providers could insure that they gave the unambiguous and proper advice
to their clients. Lacking an accepted definition of wealth, the industry would break it
down into components; others would create the holistic wealth movement, alternative
wealth care providers would provide a “counter culture” to the oppressive, hierarchical
wealth care establishment.
A revolutionary movement arises, in which wealth is personalized. Each person
would be responsible for their own wealth, and it would be a private matter. If they chose
to have professional help managing their wealth, that is their decision. The wealth care
industry vehemently opposes this movement, saying that people would spend their money
in foolish ways, would not understand all of the nuances of wealth developed by the
specialists over the years. People may violate standards of wealth management, and
many would squander it away. People would go broke and end up on the street. “Our
country has the best wealth care management system in the world” they would say.
The revolutionaries would say that wealth has to be managed by the individual,
according to their particular context. The notion of wealth changes according to how
much they have, their family and social context, their personal support network, age and
a host of other issues. There is no one correct way to wealth, everyone has to learn this
for themselves.
We have a vibrant and successful wealth management system today – our
economy. We do not need to have government agencies deciding how much milk should
be delivered to San Diego each day. We do not have a universal credit card identifier
associated with each consumer, but rather allow the individual to manage their funds as
they see fit. We manage the system by managing the environment, rather than each
specific economic interaction.
Most Americans have grown up thinking that they would be responsible for their
own money management. The same attitude can be applied to their health.
Millions of little things
A Korean War Veterans web page has testimony by one of the users describing
getting a “little bit healthier” for having accessed the page. Given that the page could be
accessed by millions of people, how do we measure the effect of millions of people
getting a “little bit healthier?”
What would be the benefits of investing $5 million in a new MRI unit, compared
to supporting 100 web sites, each accessed by 1 million people, getting a little bit
healthier? How do we decide such things? “A little bit of health” is a highly subjective
thing. One person may find the Korea page to be highly cathartic, while others may be
disinterested.
64
An example of a small action being replicated for major effect can be seen in the
Grameen bank of Bangladesh. This is a bank, owned 92% by its borrowers, which serves
some of the poorest people in the world, by offering them loans with which they can buy
basket materials, a sewing machine, or other acquisitions to improve their lives and jobs.
It is not a charity – the bank expects full interest – yet it is able to transform the lives of
millions. It now serves 2.34 million members in 38,957 villages, with total savings of
about $162 million. The average household income of Grameen Bank members is about
50% higher than non-members . What started as an innovative local initiative, "a small
bubble of hope", has thus grown to the point where it has made an impact on poverty
alleviation at the national level."
The Grameen bank has personalized capital. Poor, uneducated women mired in
great poverty have been able to band together and raise their living standards en masse.
The “small bubble of hope” has been magnified millions of times over.
The Grameen Bank is an example of a totally self-reliant poverty-eradication
initiative that does not need a handout to sustain itself or its growth. The poor own and
run the bank and pay for their "development."
This success story contrasts with the many failures of impersonal, large scale
development projects such as dams and irrigation systems. Presuming the money
allocated actually makes it to the megaproject, it frequently is a mismatch for the local
culture. Rather than improving the lives of the local people, it can cause huge
dislocations in the local culture – achieving the opposite of its goals.
There are parallels between the way the Grameen bank has personalized wealth
and how we can personalize health. Grameen amplified a “small bubble of hope,” while
the Korean Veteran’s page, amplified “a little bit healthier” across a broad population.
Are there other ways in which a small amount of health capital can be leveraged across a
large population? The scalable communications technology of the Internet can be used to
make this happen.
Techniques for Personalizing the VA
Some ways in which the VA could personalize its services to the Veterans are:
Personalization Technique
Create metrics which allow the organization
to deal with its long term, goal oriented
values to the individual.
Apply these metrics as organizational
intrinsics, regardless of hierarchical scale or
scope. Everyone in the organization should
understand their role in achieving these
metrics.
Create an information system which would
allow the management of information
80
Example
Use RealAge80 age reduction metric for veterans
to manage their health affairs. Develop
additional metrics specific to veterans.
Measure management on the aggregate age
reduction as indicated by the RealAge metric
above. Work into “Vision for Change” type of
document.
Implement Health e-Vet program to create a
veteran-specific information space,
Roizen, Michael, MD. RealAge, Are you as young as you can be?, HarperCollins, 1999 and
http://www.realage.com
65
according to the needs of the individual.
Create an environment in which trust,
community, and mutuality can thrive.
understandable and controllable by them.
Implement a “buddy system” whereby veterans
who have been through a treatment are buddies
to those just beginning it. Collaborate with
Veteran Service Organizations.
The Language of Disease and the Language of Health
The medical informatics industry has lexicons of about 1 million terms describing
the varieties of illness. The bookstore at a medical school is full of books about disease.
The general public bookstore’s section on health and fitness, however, is wildly
different. These books describe an entirely different activity.
We don’t have a language for health. The industry uses a language of disease. Its
diagnostic instruments focus on the disease state, not the health state. The epidemic of
health requires a positive language to discuss and replicate health.
The language of health must be able to deal with the notions of vitality, resilience,
trust, mutuality, community, self-reliance, and other things far removed from the
traditional medical nomenclature. The RealAge age reduction concept – to reduce a huge
corpus of evidence-based medical information into a single value in the context of the
individual – is a promising step in this direction.
The personalization perspective is a profound shift in our notion of health care
information systems. From the perspective of the individual, the medical informatics
industry reflects almost exclusively the needs and goals of the enterprise. Nearly every
health care organization will speak of “patient oriented” care, yet this is always in the
context of “within our organization.” The patient is “captured.” The format, content,
access privileges, storage, and retention of the information is the responsibility of that
organization, with no control by the individual.
The language of health would be based on a completely different foundation,
driven by the concepts of personalization, community, mutuality, trust, and
communication.
The conditions for revolutionary rethinking of the health process are upon us,
driven by the need for health care reform, the Internet, and the public’s distaste for the
current system. The successful organization of the future will be the one which
understands how to personalize these trends to the needs of the individual.
66
Report from “Epidemic of Health” Meeting81
Suppose good health habits and wellness could spread like measles or chickenpox?
A group of medical, policy and technology professionals who believe this can happen
gathered last month to plot the outlines for an “epidemic of health”—a sense of healthawareness and empowerment among individuals that would “infect” them and become
more potent as the “infection” burgeons.
The epidemic’s vector would be the World Wide Web and its tremendously
powerful ability to transmit knowledge—and to let the user determine which knowledge
is most useful to him or her. “Person-centered” is the desired symptomatology for this
outbreak.
The laboratory for seeding the epidemic would be the Veterans Health
Administration, which constitutes the nation’s largest health care system and which
already has engaged in some visionary forays into using technology to enhance individual
access to information and to improve health status in the process.
VHA would like to undertake additional pilot projects to foster an “epidemic of
health,” deputy under secretary for health Dr. Thomas L. Garthwaite told the group which
met here under the auspices of the Center for the Advancement of Health (CFAH).
The CFAH is funded in part by the Nathan Cummings and the MacArthur
foundations, advised Dr. S. Robert Levine, who heads CFAH’s initative on “Capturing a
Promise of the Information Age: Person-Centered Health Care.” CFAH’s focus lies in the
interaction between mental and physical states that can influence health status, the
ultimate goal being to establish a scientific base that will infuse “person-centered care”
into everyday life.
“It’s a simple concept—that understanding the consequences of behavior can lead
to better health,” Dr. Garthwaite observed. “Send us your ideas,” he urged members of
the group.
Dr. Michael Roizin of the University of Chicago emphasized that the key to
improving health lies in the hands of individuals—not the medical profession. His
intensely popular website has given proof to the value of this concept: RealAge uses the
“tag” of lowering one’s “real age” through better lifestyle habits. Those who answer a
series of carefully developed questions are given their “real” versus “chronological” ages,
with advice on the steps that can be taken to become even “younger.” Each individual
controls his or her own data and can erase it all at any time.
A New Language
Health status and the Internet are like ping pong balls and mousetraps, said Thomas
Munnecke of Science Applications International Corp. (SAIC), one of the original
developers of the DHCP. One ping pong ball on one mousetrap doesn’t accomplish
anything when released, but a multitude of balls on a multitude of mousetraps lead to
constant motion.
“We are entering a new era of connectivity,” he said. “The traps are loaded and the
balls are there, ready to fire.”
81
Nancy Tomich, Editor, US Medicine, reporting on the Epidemic of Health meeting in Washington, May
3, 1999
67
But to have this “wired” interaction occur successfully, there must be true
communication, Munnecke cautioned. Too often authority replaces communication, with
rigid standards and vocabulary terms piled on each other, the result being a complex
system that thwarts rather than enables the accumulation of knowledge and exchange of
ideas.
The “sacred cow” of rigid standards needs to be “barbecued.”
“The problem is that there is no language for the flow of ideas,” Munnecke said.
”We can’t view the system from the perspective of the individual.” The idea is not to “put
a Web front-end on legacy systems,” but rather to build on the simplicity of the Web and
its three uncomplicated standards—URL, HTTP and HTML—that operate within the
constraint of IP, or Internet Protocol.
The Web makes full use of the “law of increasing return,” Munnecke observed—
“the more who have it, the more value it is to you.” The Web is not predictable or
mechanistic, it is a medium: “It is the interactions that are important.” There is no
“strategic plan” for the Web, “and it is impossible to define how big it is.”
Bad things do happen on the Web—such as proliferation of sites devoted to
pornography—simply because of the lack of control. The question, then, is how to make
the Web useful for health in a positive way—to make it orderly and chaotic at the same
time, or “chaordic?”
“We must take a leadership role in developing a positive definition of health,”
Munnecke said. So far, he said, the language of health care is too restrictive; it addresses
only a small portion of the events and circumstances that influence health and wellbeing.
For example, unemployment affects health status, but it is seen as an economic issue,
separate from health.
“There is no language for talking about healthy processes.”
The Web has become ubiquitous, Munnecke observed, with URLs appearing on
such unlikely places as jars of jam. “People expect to see things on the Web.”
The Web offers mutuality. For example, he said, a buddy system for veterans could
allow someone going through hip surgery to be mentored by someone who’s already
been through a similar procedure. The simple fact that exposing water to sunlight could
help reduce the staggering rate of childhood diarrhea in the Third World—but this
knowledge must be communicated.
“The question is, how can we trigger this?”
Thirty per cent of all Internet use centers around health-related issues, pointed out
John Kelly of Aetna/US Healthcare. “This is not a concept for the future; it’s a concept
for today,” he said of the desire to use the Web to foster an “epidemic of health.”
Importance Of Self-Interest
In health care, mistrust stems from authority, said Heather Wood Ion chief executive
officer of VNA in Orange County, Calif. Can this situation be “reframed,” and can that
be done within the VHA structure?
The issue, said Dr. Roizen, is to create self-interest—a phenomenon he has achieved
with his RealAge program, his attempt to “move evidence-based medicine to the public.”
The RealAge website is the second most widely used one on the Web; his book on
“RealAge” leapt onto best-seller lists within weeks.
68
The idea for RealAge came to Dr. Roizen during a high school reunion: He noticed
that some of his former classmates looked much older than others, yet all were the same
chronological age. He developed a template of questions that can be used to calculate an
individual’s “real age” on-line <http://www.realage.com>, assessing such factors as
vitamin intake, cholesterol levels, smoking habits and use of seat belts.
“People want to do interactive things on the Web,” Dr. Roizen emphasized.
RealAge began its Web venture with nine servers; it now employs 69. When it debuted, it
began logging 1 million e-mails an hour.
“Buddy systems are important in making the transformational change to get
healthy,” Dr. Roizen said. And he follows this dictum himself. He remains available by
cell phone to his patients who want to stop smoking, for example, so he can help them
through those difficult moments of craving nicotine.
John Bartlett also knows the value of the buddy approach. His program in Georgia,
DayOne, is a “life-management services package” that relies on individual responsibility
and self-interest to help substance abusers, along with a similar level of responsibility on
the part of center staff. The program operates independently of the insurance industry;
those who participate must pay from their own pockets—a powerful self-motivator. “We
knew insurance could not cover our services anyway.”
“We wanted to change the rules of the game,” he said. “We recognized that a
facilitative environment is needed to help people change behavior over time.” The goal of
the program is to transition from “provider-directed to self-directed care.”
DayOne centers are located in retail strip malls within one mile of a major retail
mall, to fall within “normal driving patterns.” Television ads are employed to confer
product recognition—to make the program “branded” and thus trusted.
Rita Moya of the National Health Foundation said her organization has maintained a
health information program since the early 1990s, the triggering factor being the Los
Angeles riots. Many of those needing care in the aftermath were uninsured, “and we tried
to help them with electronic access” to community services. But this program focused on
transactions and did not achieve “our ultimate goal” of delivering “health,” she said. Her
organization now is researching the “motivational aspect” of finding “health” on the
Web.
As part of its work, the National Health Foundation examined 144 popular Web
sites but found that few deal with the preventive public health issues that relate to health
status. Among its activities: building databases “from the ground up” using zip codes as
the only identifiers—databases which can be used for public health studies.
New Way Of Thinking
“We’re in the midst of a fairly profound transformation,” Dr. Garthwaite said of the
Veterans Health Administration, with “dramatic change” occurring over the past five
years: More than half of hospital beds have been closed; about 400,000 more veterans
have been seen by 20,000 fewer employees; more than 270 community-based outpatient
clinics have been opened, and VHA has moved from a hospital system “designed to
intervene in the last stages of illness” to one that is population-based, with performance
measures linked to patient outcome.
VHA’s outcome measures all equal or exceed those in the private sector, he noted,
“in terms of our ability to do immunization, do mammograms, give aspirin and beta
69
blockers after heart attacks—a whole list of things we wouldn’t have done a few years
ago.”
At the same time, VHA is preparing to change its information technology system,
moving from the Decentralized Hospital Computer Program (DHCP), which has
“reached the limits of its possibilities,” to a collaborative system with other federal
agencies: the G-CPR, or government computer-based patient record.
Dr. Rob Kolodner, associate chief information officer for business enterprise
solutions and technology in VHA, said the DHCP has proven a useful and valuable
information system. “But now we need access to information beyond our boundaries,” he
said.
VHA also is launching an initiative to look at the earliest symptoms of disease, an
exercise Dr. Garthwaite conducted mentally while attending a meeting on veterans home
loan guarantees. Why would a veteran miss a home loan payment, when he or she
obviously wanted to buy the home? “Is that the first early symptom of a disease, for
which we would later see that individual in our health care system?”
This in fact now is being studied, Dr. Garthwaite said: “I have some statisticians
who are trying to merge the older home-loan default files with our later health care files.”
While data allow these types of correlations, making such associations also requires
a “different way of thinking,” he said. “If we can begin to the place where we think of
not patients, but people, and what it is they’re doing out here that ends up with bad health
down here, the patient will be better off. We’ll ultimately save a lot of money and
improve a lot of lives.”
Such correlations could be made in joint venture with the military, suggested Dr.
Kolodner. “We could say, ‘what are the early flags’ And maybe farther along we could
raise a slightly stronger flag, saying ‘press this button and we’ll get you help.’ This would
be done anonymously, to keep the trust.”
Through a variety of links on the Web, the individual could be presented with a
broad range of information—broader than VA per se or even health care per se.
Using Data
Aetna/US Healthcare maintains a searchable database—and smaller subsets of
data—on the 16 million “members” for whom it manages care, related Kelly. Employees
have “real-time” access to the data and can use it to communicate with both providers
and members. For example, if a patient with asthma must begin therapy with steroids,
monitoring is put in place.
Individual patients currently do not have access to the Aetna/US Healthcare
database, though this is being explored. “We want to make the data available to the extent
possible,” Kelly said.
An epidemic of health must spring from existing systems, he advised, because they
represent such a significant investment for most organizations: “You have to take that
world as it as; you can’t force change.” The real issue is “finding ways to access the
available data.”
Dr. Levine said there appears to be a substantial amount that can be accomplished
with legacy systems as the starting point.
70
An added challenge is presented by the “turmoil” in private-sector health care, Kelly
observed, with patients changing plans frequently. Even small differentials in premiums
can prompt individuals to move to a different insurer.
Edgar Smith of Just Care has devised a “smart” credit card based in Web technology
that can be used for health care. “The card allows the individual to be in control,” Dr.
Levine pointed out. “It can be personalized, and it allows patients to go to other health
plans.” It also facilitates correlation of various data— from pharmacies and clinical
laboratories, for example.
The card has been beta tested and now is being placed into use in Texas. Under
consideration is “building in” the cost of a nurse call-in program, Smith said. Dr. Levine
pointed out that the owner of the card “is the owner of a collaborative cyber
environment” and controls the information it contains.
Trust An Essential Factor
Epidemics begin with small, simple conditions, noted Munnecke, and that is where
the epidemic of health must begin. “Everybody wants the penthouse suite in the
skyscraper; they don’t want to talk about the foundation.”
There are several dimensions to consider in fostering an epidemic of health, he said:
• The process of intervention—that is, the health care system’s providing treatment
for the patient. “Clearly this is very important. If I were going in for brain tumor surgery,
I’d want to make sure I had the best possible process.”
• Collaborative space—the concept of mutuality and collaboration. “Part of this is
people collaborating with each other independent of the enterprise, through support
groups.”
• Trust—the essential ingredient for making collaboration valuable.
How can the individual be induced to voluntarily become exposed to the epidemic?
“What we’ve found,” advised Dr. Roizen, “is you’ve got to make it personal and
interactive. And you have to be honest with them.” If an individual wants information on
magnetic therapy, for example, “you have to say we don’t have data on this yet. But you
have to let them ask the question that is important to them.”
“RealAge” attempts to build trust, he said, by allowing the individual complete
control of the data he or she accesses: “They can put in any password, any e-mail address
they want. If they want to kill their data, they can kill it....A key component is that you
control the data, and you control who sees the data.”
Moya noted that research has shown accuracy to be greater when an individual
interacts with a computer rather than with another person.
The perceived risk involved in revealing information must be taken into account,
said Lt. Col. Mary Ann Morreale, USAF, MASC, director of the Military Health System
Interagency Technology Sharing Program For example. she said, military personnel may
find their careers linked to their health. In what may be an apocryphal story but one that
is believed by at least some members of the Marine Corps, the perception exists that
Marines who are temporarily injured cannot be deployed for three months and thus are
ineligible for promotion. “If you’ve ever seen a Marine’s record, there is almost no
record, because if you’re put on a profile for limited duty, you cannot be promoted during
that time period,” a Marine colleague has asserted.
71
If indeed true, the same concern likely would hold true for firefighters and police,
Lt. Col. Morreale suggested.
A “key issue,” said Dr. Garthwaite, is to ensure that data are used to benefit the
individual and not the organization or system. For example, VHA is trying to develop a
patient report card that would provide information about health status. To let the patient
control the data used to develop this report card would mean that VA “has to totally give
it up.”
“The model we’re talking about is letting go, and saying ‘yes, we have the data in
our systems,’ but once we give it over, anything in addition that person puts into it is
theirs. They choose whether to release it to us. It’s up to us to establish the trust that they
will—but if they choose not to, that’s okay too.”
“The more patients trust the enterprise, the more information they will give,”
observed Munnecke. “The more honest they’ll be about their drinking habits, or their
addictive habits.”
Bartlett said he sees the basic issue to be whether ”the current enterprises that
constitute the health care delivery system” should have a role in developing a personcentered system. “Obviously, the enterprise can devote the resources to it....By creating a
culture and set of values and actions, step by step, that build trust over time,” a
“chaordic” system results—one in which chaos and order are balanced. “You have to be
willing to turn over control...People are very aware of the ramifications of information
they share within social systems. People don’t trust their HMOs.”
Trust comes from having total control oneself, emphasized Dr. Roizin: “I put in my
own password; I put in my own name...It is totally patient controlled, and trust builds up.
The value of the organization, I think, is to provide the health space—someplace to talk
and gather the information in a secure way.”
What likely will be needed, he said, is two sets of data, one of which contains data
individuals are willing to give to an enterprise such as the VA, and the other of which
contains entirely personal data that need not be shared with anyone.
Physician-patient interaction is not going to “go away,” cautioned Dr. David
Stevens, chief academic affiliations officer in VHA. “We need to look at how we change
the culture of the clinicians to give more authority and power to the person sitting in front
of him.”
Dr. Levine suggested that a “third party” may be needed to “establish rules of
evidence” for how information is gathered and organized, “so that there is some way,
when individuals seek information, they can have a sense that it meets certain rules of
evidence,’ and therefore can be judged and valued.
“Trust is local and intimate,” said Ion, “and we will only build it over time, by
choice.”
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New Health and the New Economy82
[The telegraph] binds together by a vital cord all the nations of the
earth. It is impossible that old prejudices and hostilities should longer
exist, while such an instrument has been created for an exchange of
thought between all the nations of the earth.
Charles Briggs and Augustus Maverick, 1858
[It is] inconceivable that we should allow so great a possibility for
service and for news and for entertainment and education [as radio] ...
to be drowned in advertising chatter or used for commercial purposes.
Herbert Hoover, 1922
Television drama of high caliber, produced by first-rate artists, will
materially raise the level of dramatic taste of the American nation.
David Sarnoff, 1941
Cable [television] will create great access to information; it will also
greatly assist self-identity, democratic processes, educational
environments, and community cohesion.
Barry Schwartz, 1973
Our new ways of communicating will entertain as well as inform. More
importantly, they will educate, promote democracy, and save lives.
Al Gore, 1994
Our health, and our system for dealing with it, is perched on a cusp of radical
change. The convergence of the Internet, the World Wide Web, and the “New Economy”
will trigger a cascade of changes throughout the health field.
Although each new technology is introduced with great expectations of utopian
outcomes, these are not always realized. Good things do not necessarily happen from
new technologies – they require constant vigilance. If we are to assure that the Internet
and the new economy actually improve our health, we must act now rather than later.
This requires a fundamental reexamination of the health process.
This paper will discuss the health system triggered by the new economy as “new
health.” It is a broader view than the “health care industry,” indeed, it argues that the
industrial model of health is not the appropriate paradigm for dealing with our health
issues.
An industry, in the classical sense of the industrial revolution, is based on the
production of goods or services based on the notion of scarcity. The oil industry extracts
oil, adds value by refining and distributing it, and sells the resulting product according to
the “law” of supply and demand. When person A buys a gallon of gas, it is a gallon
depleted that person B can no longer use. There is a well-defined relationship between
82
Munnecke, Tom, prepared under contract for Business Enterprise Solutions and Technologies, Veterans
Health Administration, Department of Veterans Affairs, October, 1999
73
providers and consumers. Economists can measure productivity; accountants can create
the “bottom line” of each division, and managers can maximize profits and value for
shareholders.
Health is fundamentally different than oil, however. Person A’s getting healthier
does not deprive person B of their health. In fact, one person’s getting healthier
increases everyone else’s health. Someone who is able to avoid AIDS, Tuberculosis,
Smallpox, Polio, sexually transmitted diseases, whooping cough, or a cold, makes
everyone else a little bit healthier. The fewer drunk drivers there are, the safer we all are.
Someone who has enough energy at the end of the day to volunteer for school, church, or
civic activity, will make their community a little better. Healthy, well-adjusted families
will reduce crime, vandalism, and substance abuse problems.
The net effect is: the healthier you are, the healthier I become. Traditional market
economies do not deal with this. Supply and demand economics are based on scarcity. If
there is not a natural scarcity of a product, the scarcity is created through branding or
barriers. The old health market creates barriers in order for the market mechanism to
operate. Consider that an Internet health startup in Finland is able to operate everywhere
in the world except United States and Canada.
In order to turn health into an industry, it had to become a scarce commodity.
Somehow, we had to introduce a barrier that would make it “productive” for someone to
“produce” for the “consumer.” Hence, the health care industry. Health was the
responsibility of “providers,” and people were placed in the passive role of “consuming”
what the industry provided. New health is based on the infrastructure of the new
economy. The old paradigms, metaphors, and notational systems for industrial era health
care system are all subject to rethinking in the new economy.
The New Economy
There is evidence that a major shift in the global economy is taking place. This is
largely driven by the rise of the Internet and the connectivity it provides:
“Networks have existed in every economy. What’s different now is that
networks, enhanced and multiplied by technology, penetrate our lives
so deeply that “network” has become the central metaphor around
which our thinking and our economy is organized. Unless we can
understand the distinctive logic of networks, we can’t profit from the
economic transformations now under way.”83
The distinctive logic of the network is a fundamental shift from traditional
hierarchical perspectives. In a network economy, the more plentiful things become, the
more valuable they become. The more people visit a web site, the more valuable it
becomes, which in turn attracts more people. This is an inversion of the traditional
supply and demand economics, in which value is created by scarcity.
Tim Berners-Lee, the inventor of the web, was well aware of network thinking.
He envisioned the web as a universal space for information, in which people could make
their own connections:
“In an extreme view, the world can be seen as only connections,
83
Kelly, Kevin, New Rules for the New Economy, Viking, 1998, p. 2
74
nothing else. We think of a dictionary as the repository of meaning,
but it defines words only in terms of other words…what matters is the
connections.”84
He saw the need for rapid, unlimited growth:
“Philosophically, if the Web was to be a universal resource, it had to be
able to grow in an unlimited way. Technically, if there was any
centralized point of control, it would rapidly become a bottleneck that
restricted the Web’s growth, and the Web would never scale up. Its
being “out of control” was very important.”85
In order to create a system in which health is a universal resource we need to
understand the dynamics of “out of control” systems. We need to understand how
complex adaptive systems can start from a simple initial condition and evolve over time
adapting to their environment.
There were other systems similar in concept to the web, which failed because they
did not deal with network economics. Ted Nelson proposed the Xanadu system in
1970’s, based on an ownership and payment system which created a barrier to entry. It
was as if Amazon.com or E-bay tried to collect payment from the viewer every time they
clicked on their site. Another system, Gopher, had such stringent licensing and
intellectual property restrictions by the University of Minnesota that it was overtaken by
the license-free WWW system.
The three standards which initiated the web were the simple definitions for URLs,
HTTP, and HTML. There were not computer science breakthroughs or fundamental
discoveries. They were simply a common-sense approach to enable a very powerful
vision. The power of the web comes from its universality and generality. Berners-Lee
speaks of the web as an “exercise in generality.”
Those looking for traditional hierarchical control structures find only a space, in
constant flux, and highly dependent on the point of view of the observer. There is no
“top” to the web, nor is there “one correct way” to use it.
Kelly speaks of this shift:
The new economy deals in wispy entities such as information,
relationships, copyright, entertainment, securities, and derivatives.
The U.S. economy is already demassifying, drifting towards these
intangibles. The creations most in demand from the United States
(those exported) lost 50% of their physical weight per dollar of value in
only six years. The disembodied world of computers, entertainment,
and telecommunications is now an industry larger than nay of the old
giants of yore, such as construction, food products, or automobile
manufacturing. This new information-based sector already occupies
15% of the total U.S. economy.
84
Berners-Lee, Tim, Weaving the Web, The Original Design and Ultimate Destiny of the World Wide
Web, Harper San Francisco, 1999, p.12
85
ibid., p. 99
75
Yet digital bits, stock options, copyright, and brands have no
economic shape. What is the unit of software: Floppy disks? Lines of
code? Number of programs? …The dials on our economic dashboard
have started spinning wildly, blinking and twittering as we head into
new territory. It is possible that the gauges are all broken, but it is
much more likely that the world is turning upside down.86
What are the units of health in this upside-down world of network economics?
Health did not fit well into the old economics of supply and demand. Is it possible to
conceive of a health system driven by network economics, in which everyone can get
healthier, in which no one is in control? Whether or not we “approve” or the powers that
be “manage,” the network economy is going to force massive changes in the system.
Ten Rules for the New Economy
Kelly proposes “10 radical strategies for a connected world.” 87 For the sake of
discussion, this paper will discuss them in light of new health:
1. Embrace the Swarm: As power flows away from the center, the competitive
advantage belongs to those who learn how to embrace decentralized points of
control.
2. Increasing Returns: As the number of connections between people and things
add up, the consequences of those connections multiply out even faster, so that
initial successes are not limiting, but self-feeding.
3. Plenitude, not Scarcity. As manufacturing techniques perfect the art of making
copies plentiful, value is carried by abundance, rather than scarcity, inverting
traditional business propositions.
4. Follow the Free. As resource scarcity gives way to abundance, generosity begets
wealth. Following the free rehearses the inevitable fall of prices, and takes
advantage of the only true scarcity: human attention.
5. Feed the Web First: As networks entangle all commerce, a firm’s primary focus
shifts from maximizing the firm’s value to maximizing the network’s value.
Unless the net survives, the firm perishes.
6. Let Go at the Top. As innovation accelerates, abandoning the highly successful
in order to escape from its eventual obsolescence becomes the most difficult and
yet most essential task.
7. From Places to Spaces. As physical proximity (place) is replaced by multiple
interactions with anything, anytime, anywhere (space), the opportunities for
intermediaries, middlemen, and mid-size niches expand greatly.
8. No Harmony, all Flux. As turbulence and instability become the norm in
business, the most effective survival stance is a constant but highly selective
disruption that we call innovation.
9. Relationship Tech. As the soft trumps the hard, the most powerful technologies
are those that enhance, amplify, extend, augment, distill, recall, expand, and
develop soft relationships of all types.
86
87
Kelly, p. 3
Kelly, p. 161
76
10. Opportunities before Efficiencies. As fortunes are made by training machines
ever more efficient, there is yet far greater wealth to be had by unleashing the
inefficient discovery and creation of new opportunities.
Embrace the Swarm
“Swarm” is Kelly’s name for the dynamics of a large group of autonomous agents
acting independently, yet accomplishing a common goal. A colony of ants or a flock of
birds flying in formation exhibit collective behavior which transcends that of any single
member of the swarm. Dumb parts, properly connected into a swarm, yield smart results.
This is a shift from the past:
“The atom is the icon of the 20th century. The atom whirls alone. It is
the metaphor for individuality. But the atom is the past. The symbol
for the next century is the net. The net has no center, no orbits, no
certainty. It is an indefinite web of causes. The net is the archetype
displayed to represent all circuits, all intelligence, all interdependence,
all things economic, social, ecological, all communications, all
democracy, all families, all large systems, almost all that we find
interesting and important. Whereas the atom represents clean
simplicity, the net channels messy complexity.”88
Health is a messy, complex issue. Attempts to simplify it into neatly categorized,
independently measurable entities are notoriously difficult:
“For example, after several meetings and unanimous consensus,
expert’s [physician specialists] estimates of the effect of colon cancer
screening on colon cancer mortality ranged from 5 to 95%. Fifty
cardiovascular surgeons’ estimates of the probabilities of various risks
associated with xenografts vs mechanical heart valves ranged from 0%
to 50%. For one particular risk, the 10-year probability of valve failure
with xenografts, the range of estimates was 3% to 95%…
Virtually all of the current quality assurance and cost-containment
mechanisms assume that there is not only “safety in numbers” but
“accuracy in numbers.” In other words, if the decisions of the
individual physicians cannot be trusted, the collective decisions or
actions of a larger number of physicians can be trusted.”89
This kind of thinking leads to statistical aggregation and “one correct way”
management styles. For example, the state of Oregon planned to revise their Medicaid
program using a method based on a Quality of Well Being (QWB) scale. The scale
defined 24 health or functional states, ranging from perfect health to death. Each QWB
state was assigned a weight to reflect the quality of life associated that category. These
scores and weights were then plugged into a formula. This leads to problems when trying
to do arithmetic on these scores:
88
89
Kelly, p. 9
Eddy, David M., Clinical Decision Making, From Theory to Practice, Jones and Bartlett, 1996, p. 3,6
77
“To derive weights for the QWB states, Oregon citizens were asked to
describe how different types of symptoms and health states would
affect their quality of life as individuals. The form of the question was,
“If you had [some collection of symptoms or limitations], how much
would that decrease the quality of your life, on a scale of 0 (death) to 1
(perfect health). To say that living with symptoms in QWB state 8
(vomiting, fever, and chills) has a weight of .63 means that having
these symptoms was judged to decrease the quality of an individual’s
life by about .37, or about one third as much as death itself (which
moves QWB from 1 to 0)…Thus, the score of 0.63 for category 8 would
imply that, if the costs and durations of two treatments were the same,
treating three people to prevent vomiting would be equivalent to
treating one person to prevent death. Even if responders answered the
original question accurately, they might not agree that the answer
should be interpreted or used this way.”90
Swarms are non-linear: the whole is greater than the sum of the parts. Linear
techniques which reduce complex systems into parts, and assume the whole is exactly
equal to the parts are bound to fail – or at least be unable to cope with the difference
between the whole and the sum of the parts.
Increasing Returns
The “fax effect” describes the dynamic of the growth of the fax machine. As each
new fax machine was purchased, it increased the value of the existing base of fax
machines. This “increasing returns” effect drove the fax market to ever-larger numbers
of fax machines.
This is a driver in much of the network economies. Web sites vie for “eyeballs,”
the number of visitors to the site. The more “eyeballs,” the more valuable the site
becomes. This positive feedback loop fuels the growth of the web, as more users and
sites create ever more value for ever more users.
Health can be envisioned as something subject to increasing returns. Everyone
can become healthier, and in doing so, make everyone else healthier. The August 1999
Economist magazine issue said that the single greatest contribution to improving global
health would be to get people to wash their hands before eating. This is not an expensive
or particularly difficult global health problem. It illustrates increasing returns in the new
health: the healthier we become by washing our hands, the less disease we communicate
to others. The healthier everyone else and our communities become, the healthier each of
us becomes.
Plenitude, not Scarcity
The new economy is driven by the notion of plenitude, not scarcity. There is no
shortage of information on the web, and it is growing daily. Those seeking information
are constrained by the quality of the search engines and their time to use them. Plenitude
works to drive value, open up closed systems, and spins off immense numbers of
activities. In a network economy, the more plentiful things become, the more valuable
they become.
90
Eddy, p. 139
78
According to Kelly’s strategy, successful new economy participants will:
1. Touch as many nets as possible, to place their offerings in as many situations of
increasing returns as possible.
2. Maximize the opportunities of others, allowing others to build their success. E-bay,
for example, has opened up an entirely new market for home entrepreneurs to sell
their goods globally instead of just local swap meets.
3. Avoid proprietary systems. Systems which have a barrier to entry will eventually
open up or die, according to Kelly.
Health can be driven by plenitude. The closed, proprietary systems of health care we
have today are based on scarcity.
Follow the Free
The net rewards generosity, as the notions of increasing return and the economics
of plenitude invert traditional supply and demand curves. In traditional economics,
increasing demand would drive the price up. In new economics, increasing demand
drives the price down. Ubiquity drives increasing returns on the network. Companies
often find that it is in their own best interest to drive things to be ubiquitous by giving
them away free. Much of the information available on the Internet is given away free, in
the hopes of creating “increasing returns” for the future.
How can the health care provider compete in this new economy? It will be an
environment in which the network value of a provider is paramount – their connectivity
to their customers. Why not give away their information and low cost screening
activities as a way of creating additional trust and attention for future business? This
brings up entirely new forms of value creation in health. Just as Reader’s Digest was the
most widely read magazine in its heyday, and TV Guide was more profitable than the
three major networks it guided viewers to, new forms of value creation will abound in the
new economy.
Feed the Web First
The web is both the infrastructure and the role model for large-scale associative
systems seeking the dynamics of increasing returns. Dramatically increasing
communication speeds and lower cost terminals will make web access soon as ubiquitous
as television access is today. “Bit by bit, the logic of the network will overtake every
atom we deal with.” Already, the cost of electronics in a car ($728) is greater than that of
steel ($675). Kelly describes a relentless progression towards web-based activities:
1.
2.
3.
4.
91
Increasing numbers of inert objects are animated by information networks.
Once the inert is touched by a network, it obeys the rules of information.
Networks don’t retreat, they tend to multiply into new territories.
Eventually, all objects and transactions will be run by network logic.91
Kelly, p. 77
79
Much of health is information. It can be very expensive to create the first copy of the
information, but succeeding copies are nearly free. For example, the first copy of a
vaccine is very expensive, but immunization is one of the cheapest forms of health care.
The relentless logic of the web would subject this information to the laws of increasing
returns. This requires a new way of understanding the notion of health capital…those
who increase the health capital of society would be rewarded for their efforts.
Let Go at the Top
An MIT economist wrote: “Firms are remarkably creative in defending their
entrenched technologies, which often reach unimaginable heights of elegance in design
and technical performance only when their demise is clearly predictable.” Those who
have risen to the top of their market place have the most to lose from change; those
attacking have little to lose, and everything to gain. Digital Equipment CEO Ken Olsen
said during his peak that Unix was “snakeoil” and PCs were “toys.” After a long decline,
his firm has since been acquired by Compaq, one of those “toy” manufacturers.
Established Wall Street brokers did not want to lose their business to low cost
online traders. Then start up companies brought out online trading services. They were a
great success, and the established brokerages had no choice but to offer their own
services. Amazon.com did not ask Barnes and Noble if it was a good idea to sell books
online.
Future successes in new health will likely come from small start up “attackers” at
the “bottom” rather than established providers with a vested interest in maintaining their
current operations, organizational culture, and ways of doing business. They are
spending so much of their resources “integrating” themselves that a fast moving,
relationship-driven association of competitors can offer lower cost, higher quality
services. New health has to start from the individual and the bottom.
From Places to Spaces
As the network diminishes the notion geography, economies will be driven by
“spaces” rather than “places.” Few people know or care where Amazon.com warehouses
are located, or whether they have a warehouse or not. To them, the Amazon shopping
experience, browsing among other reader’s comments and similar books is a space in
which they feel comfortable. Spaces shift economics in several ways:
1.
2.
3.
4.
A different kind of bigness
Rampant clustering
Peer authority
Re-intermediation
The web itself is a different kind of bigness:
“What was often difficult for people to understand about the design [of the
web] was that there was nothing else beyond URIs [URLs], HTTP, and
HTML. There was no central computer “controlling” the web, no single
network on which these protocols worked, not even an organization
anywhere that “ran” the Web. The web was not a physical “thing” that
80
existed in a certain “place.” It was a “space” in which information could
exist.”92
The restrictions of behavior in a place do not apply to that of a space. Linear
value chains become adaptive value webs. All nodes are intermediaries, and network
connections become valuable.
It is possible to conceive of health occurring within a “space.”93 This notion is
different from the traditional enterprise-centric viewpoint, which is derived from the
point of view of an enterprise operating on an individual. The notion of a space allows an
inversion of the perspective – the person is at the center, and providers are at the
periphery.
Personal Health Community
The Personal Health Community (PHC) is an essential building block for creating
a space for the health process for the benefit of the individual. Each individual’s PHC is
under their personal control. They chose the members of the community with which they
wish to interact, based on their personal health care interests, needs, and beliefs.
Providers “connect to compete” and become part of as many PHCs as possible. Those
who are the most trusted, and provide the best service are the ones who are selected.
The PHC contains the individual’s data vault, which is a secure, trustworthy
storage mechanism which holds their information in various zones. Zones are separately
controllable by the individual. For example, allergies and special emergency instructions
may be kept in publicly accessible zones, while family active medications may be kept in
a more restricted zone, accessible only to the individual’s treatment team, pharmacists,
optometrist, dentist, and chiropractor. Some genetic testing results may be zoned to be
accessible only upon direct permission of the individual.
The PHC is thus a mediator and tracker of the flow of information about an
individual. The individual controls and has the ability to monitor these flows. Those
who access information realize that they are accessing an individual’s PHC, and that their
access is being tracked.
The owner of the PHC is thus at the center of a health community of their own
choosing. They are able to enlarge or scale down access to their information according to
their personal preferences. For example, some Catholics may wish to allow their priest
access to their medical records, others may not. Others may wish to share some
information, but keep some private. These decisions are made at the individual level, not
at the aggregate level of “All Catholic priests can/cannot see all Catholic patient
information.”
Similarly, different individuals have different health beliefs. Some have great
aversion to taking drugs. Some may believe in acupuncture, others homeopathy. There
is no one correct definition of the proper health community; it is an interaction between
individuals, their personal situation, environment, belief system, financial status, family,
community, and a host of other individual parameters. There is no “one correct way” to
deal with an individual’s health.
The PHC supports this notion by allowing individuals to grow this community
according to their own interest. For example, suppose someone comes down with
92
93
Berners-Lee, p. 36
Contact the author for a January, 1998 paper entitled HealthSpace.
81
influenza, and decides to browse the online groups for others with the same symptoms.
They find that most people complain of 48 hrs of extreme fatigue, mild fever, and
coughing, after which they have about 2 weeks of a cough. Interacting with the group,
they find that the most effective treatment for the cough is to take a hot shower, directing
the water on their chest. Just having others to talk to and share complaints about the
illness is a function of the community. The convergence of the group’s lessons learned
from everyone else’s trials and tribulations provides a valuable health service, and an
example of increasing returns of new health.
Note the difference between this and the traditional doctor’s office visit. After
spending time in the waiting room with a depressed immune system, exposed to other’s
ailments, the patient has a few minute “snapshot” interaction with the physician. The
physician may see many patients with the same ailment, but only sees feedback from
those whose treatments fail. Someone who successfully battles the problem on their own
will not return to share their success story. Therefore, the system replicates failure, not
success.
The online community, because it is interactive, however, will share their success
stories with each other. Perhaps some of these are “old wives tales,” and some are
derived from believers on the fringes of the alternative medicine frontiers. The individual
is responsible for considering the source of the information. The individual is responsible
for understanding and dealing with multiple streams of health information. The notion of
trust becomes paramount.
Relationship Tech
The central economic imperative of the network economy is to amplify
relationships, a tremendous shift from the notion of the industrial era’s imperative to
increase productivity. Links between objects on the network define the network.
Producing and consuming fuse into a single verb, prosuming, coined by Alvin Toffler in
1970. Individuals produce health for others when they fight off an infectious disease, for
example.
Relationships which require two parties to invest in each other increase in value
twice as fast as those in which only one side invests. Telephone companies sell to
“friends of friends”, creating circles of relationships which increase their customer base.
In the same way, new health relationships can drive an ever-expanding base of
activity. The more people trust a given provider, the more valuable it becomes. Trust in
the new health and new economy is a critical issue:
“Trust is a peculiar quantity. It can’t be bought. It can’t be downloaded. It
can’t be instant – a startling fact in an instant culture. It can only accumulate
very slowly, over multiple iterations. But it can disappear in a blink….Trust is
tough because it is always linked to vulnerability, conflict, and ambiguity. For
managers steeped in rationalism, hierarchies, rule-based decision making,
and authority based on titles, this triad of vulnerability, conflict, and ambiguity
threatens a loss of control.”94
94
Kelly, p. 133
82
Trust in the current health care system is a critical issue, which is eroding rapidly
as hierarchical, command, and control management structures descend on the field.
Opportunities before Efficiencies
The industrial era’s focus on productivity as a metric was inspired by efficiency.
It is difficult to argue against efficiency; one would certainly not want to advocate a
system which was inefficient.
However, like the Oregon system that equated three vomiting people to one death,
our metrics for efficiency miss critical needs. To measure productivity, we need uniform
outputs. In order to unify outputs, we need to reduce complex interactions into snapshots
of simple, measurable quantities. This is the basic reasoning behind the transaction. We
have 500 years of developing accounting systems based on the aggregation,
categorization, and summation of transactions. The transaction, however, has become the
anchor that is sinking the very ship it is attempting to stabilize. We need a new form of
understanding adaptive systems, ones that will deal with the messy vagaries and
complexities of health.
“Until Charles Darwin’s discovery of evolution, life was surveyed in
the present tense. Animals were probed to see how their innards
worked, plants dissected for useful magical potions, the creatures of
the sea investigated for their strange lifestyles. Biology was about how
living organisms thrived day to day.
Darwin forever transformed our understanding of life by insisting that
life didn’t make sense without the framework of its billion year-old
evolution. Darwin proved that even if all we wanted to know was how to
cure dysentery in pigs…we had to keep in mind the slow, but
commanding dynamics of life’s evolution over the very long term.”95
In a similar way, we can think of the old health industry as thinking of health in
only the present tense. New health must understand health as a long term, adaptive,
constantly changing interaction between huge numbers of people.
95
Kelly, p. 141
83
From Enterprise to Person-Centric Health Information Systems96
A New Perspective of Health and Information
Albert Einstein imagined riding a beam of light, and discovered relativity. Jonas
Salk imagined being a poliovirus, and discovered a vaccine. Both of these inverted
perspectives triggered great discoveries. A new inversion of perspective in health is
emerging, dealing with the shift from enterprise-centric to person-centric information
systems:
“The patient is the center of the health care universe, not the hospital.
Information systems of the future have to be built around the patient - what
his or her needs are, what services he or she receives, and what are the
outcomes of our interventions and other efforts. We have to be able to track
all these things across geography and across time. They will have to be
unlinked to any specific organizational setting or geographical setting. That
will require a paradigm shift in how we view our technology in the future.”97
To date, computers and information systems in health have been dominated by the
organizations delivering health care. They put their enterprise at the center, with patients
at the periphery. The needs and survival of the enterprise were driving factors in the
evolution of the system, the type of information collected, and the use of that
information.
With the advent of mass interactive communication technology such as the
Internet, we now have an infrastructure upon which to rethink the role of health and
information. The individual can be the center of their private health universe. Within
this universe, enterprises will compete by personalizing their services to their customers,
rather than integrating their internal operations.
A key component to this new model of health information is the notion of each
person having their own private information space, controllable by them, which holds
their health information. Those who need access to their health information are able to
access this information in a secure manner that is mediated and tracked by the software
under the control of the individual.
The mechanism, called Health e-Vault, is a radical shift from the traditional
approach to the electronic medical record:
1. It is designed around the individual, not the health care provider.
2. It assumes that over the life of the individual, there will be a large number of
providers, suppliers, and other associations involved with the individual’s
health. These will not be physically co-located.
3. It assumes that information formats will be constantly changing, and that there
will not be any “one correct way” to record health information.
4. It brings issues of trust, confidentiality, ownership, and access to health
information to the forefront, making them critical success factors, rather than
side effects of enterprise transaction processing.
96
Munnecke, Tom, prepared for VHA , April 1999
97 Kizer, Kenneth, "Forms in the Fog: Information Management in the New VA", speech to VA
Information Technology Conference, May 19, 1997, Austin, TX
84
5. It treats health care as only one extreme of the health spectrum. The “normal”
state of the individual is assumed to not be engaged in disease-based
activities.
It supports and enhances the role of communications within a trusted community
of interest as a key contributor to the health of the individual.
This paper uses the term “person” rather than “patient” for several reasons:
1. The word “patient” implies a disease state and a provider who is treating it in
a health care setting. Ideally, the person would not be in the disease state in
the first place.
2. The goal of the system is to keep the person from becoming a patient, to live a
healthy life independent of the disease process as long as possible.
Similarly, it uses the term “health” rather than “health care” to shift the focus on
the health process of the individual. Health care is but one portion of the health process.
The Exploding Complexity Enterprise-Centric Information Systems
Health informatics has been attempting to solve the health information problem
for the past 3 decades. It has been working from the perspective of the enterprise,
attempting to integrate the divergent sources of information into meaningful collections
maintained by the enterprise. The widespread automated, online health information
system, however, is as elusive today as it has been for the past 30 years. The industry,
medical technology, computer technology, and medical knowledge are all changing faster
than our integrated information technology has been able to cope. Nomenclatures,
coding schemes, government regulations, and payer needs have all expanded rapidly.
This has lead to explosive complexity that is rarely fully realized by anyone dealing with
only a part of the problem. Each sees their component as relatively simple, but is
constrained due to “lack of integration” with the rest of the system.
A health care system is simply too complex and too dynamic to create a single,
static definition of how information will flow. In fact, it is impossible to define the
components of the system in a single, static definition. These components will vary by
patient, by time, and by context of care. There is no “One Correct Way” to deal with
health information. From a complexity science perspective, the “integration crunch” is
the core of the problem, not a path to the solution. The answer to the search for a viable
health information system lies in accepting the divergent and constantly changing nature
of health information, rather than attempting to force a single enterprise-centric
perspective on the field.98
Whether or not the industry will soon solve its integration crunch dilemma is a
matter beyond the scope of this paper. This paper discusses an alternative – the inverted
perspective – to design the information system from the point of view of the individual.
98
To illustrate the changing nature of health information: at the time of George Washington it was common
to use leaches. This practice was later abandoned as our understanding of medicine improved. Today, it
has been revived in a new form, as sterile leaches are used during microsurgery of the hand in order to
diminish the effects of swelling. The discovery of penicillin from bread mould was also a radical
transformation in our understanding of the health process.
85
There are many differences between enterprise- and person-centric health information
systems. The enterprise sees the person as an object to be acted upon, whereas the person
sees the health care enterprise as only one piece of a larger puzzle:
“Health care providers typically define problems related to diagnosis, poor
compliance with treatment regimens or continuing unhealthy behaviors, such
as smoking or lack of exercise. Patients, however, are more likely to define
problems of pain and other symptoms, their inability to function as they once
did, emotional distress, difficulty carrying out prescribed regimens or lifestyle
changes or fear of unpredictable consequences of the illness.”99
In other words, the enterprise is solving one problem while the patients perceive
another. The health care industry is largely driven by the survival needs of the
organizations that comprise it. Although nearly every health care enterprise will speak of
“patient centered” thinking, there is an implicit, “within our enterprise” which must be
inserted in front of this phrase.
These different views can be contrasted as follows:
Issue
Purpose
Context
Trust
Organization
Typical
activity
Enterprise-centric system
Survival of the enterprise
What is necessary for the
survival and growth of the
organization within its stated
goals?
Individual must trust entire
system
Integrated around operating
units/functions within the
organization
Episodes of intervention
Continuity of
care
Information
System
Management policies and
workflow
Tied to organization chart
Authority
Single and management chain
within the organization
Policies, regulations,
management chains
Control
Person-centric system
Survival of the individual
What improves the health of the
individual?
Individual builds trust in community
of interest, trusted third party for
holding databases
Associated with many different and
constantly changing set of providers
and sources of information
Adopting healthy behavior, adjusting
to injury, self-management, recovery,
fitness, compliance with providers of
health care
Concerned people and agents acting
on behalf of the individual
Tied to context of person’s needs,
computer literacy and virtual
community
The individual
The individual, within constraints
provided by regulation; community
and social standards
99 From web page of Center for the Advancement of Health, “What we do”, “Living with Chronic Ilness”
“Living with Chronic Illness, When Doctors and Patients work together”
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The person-centric model may threaten stakeholders in the enterprise model,
because it displaces them from the center of the health care universe. A trillion dollar
industry does not change easily. The patient-centric model may appear today to be too
simplistic and not powerful enough to compete with the established industry.
In the 1980’s, Digital Equipment Corporation was a dominant force in the
computer industry. Their VAX/VMS computer system was immensely as the center of
its own universe. They saw little reason to change. Ken Olsen, CEO, denounced PCs as
“toys” and Unix as “snakeoil.” A decade later, his company was purchased by Compaq,
one of those “toy” computer manufacturers.
What appears to be simple and “toy-like” in its early stages of development can
hide tremendous power as it matures. Industry after industry, such as retailing,
investment services, banking, and others are all discovering that their established models
are being dramatically changed by the Internet and the Web. These changes come from
the young upstart “attackers” rather than the established “defenders” of the current
model. It was the upstart Amazon.com, not the established Barnes and Noble, who
created the online book sales market.
A New Way of Coping with Complexity
Recent events and advances in information technology and complexity theory
point to new ways with which to deal with complex adaptive systems. Systems can grow
organically from simple beginnings, rather than being built from complex requirements.
VISA International founder and initial CEO Dee Hock named this “chaordic.”100 In this
model, complex adaptive systems grow from simple beginnings, increasing in complexity
as a result of interaction with their environment. Thus complexity “grows” evolutionarily
rather than being “built” mechanically.
Systems at this level of complexity are constantly changing and evolving. They
are in a state of “perpetual novelty,” which are not necessarily predictable. We cannot
understand them according to traditional mechanical or engineering terms, but must
rather seek to understand and control the environment in which they operate.
The World Wide Web is a system which grew from simple initial conditions to
become a major transformational force in the world today. The features that shaped the
web were:
1. Simple Initial Conditions – the “primordial soup” from which the system
emerged. For the web it was three simple definitions: the Uniform Resource
Locator (URL), Hypertext Markup Language (HTML), and Hypertext
Transport Protocol (HTTP). The simplicity of these initial conditions
2. Constraints – the boundaries outside of which the web could not stray. In the
case of the initial web, this constraint was the Internet Protocol (IP).
3. Selection Criteria – the criteria by which success was replicated in the
emerging web world. For the web, this criterion is attention. Web pages to
which people pay attention survive, while those that are ignored die off.
100 See: The Trillion Dollar Vision of Dee Hock” at http://www.fastcompany.com/online/05/deehock.html
87
Systems growing according to the process will appear to be somewhat chaotic and
disordered at first. Over time, order appears from this apparently chaotic “primordial
soup.” These features are emergent properties of the system; they were not designed into
the web by a body of authoritative experts. Today, we have search engines, virtual
communities, and electronic commerce of far greater sophistication than was imaginable
in pre-web days. Authoritative strategic planning does not control the future growth of
the Internet; an evolutionary process drives it.
Health e-Vault as a Starting Point
A network company advertises, “In the age of the network, there is no ‘there.’”
This creates a need for a notion of “here” for an individual’s health information.
Health e-Vault is a portion of this larger vision of a person-centered view of
health. It is a convergence of many forces:
1. Patient Empowerment. The notion that individuals are responsible for their
own health changes the need for information to the individual.101
2. The Internet. This phenomenon is creating a much more “connected” society,
providing an infrastructure in which people have much greater access to
information. At the same time, it has created a much greater need for privacy
and confidentiality on the Internet.
3. Health Care Reform. The need for portability and protection of health care
information has created a need for a mechanism to provide health information
to a variety of providers.
4. Complexity of health care. Individuals do not get all of their health care from
a single institution. In addition to a primary care physician, they may use
dentists, optometrists, chiropractors, specialists, counselors and others who are
not part of a single enterprise. They may belong to support groups, or rely on
family or community resources.
The health e-vault is a necessary initial condition that reflects the shift to personcentered health. One vision of this person-centered system was developed by Dr. S.
Robert Levine and others:
Vision:
To capture a promise of the information age, we envision a universally
accessible system which can, through a variety of means, help direct
individuals and families to the health information and resources they want
and need to become full partners in promoting their health and achieving
positive outcomes when ill. This system would link to a broad network of
health resources through which all parties can share, in confidence, insight,
expertise and knowledge, for the purpose of enhancing the health of
individuals, families and communities, and improving the quality of our health
care system.
101 For example, the National Library of Medicine recently discovered that one third of their Medline
information system searches were done by the public, for their personal health needs.
88
Assumptions:
1. Individuals must be active partners in maintaining and restoring
health, and caring for themselves and family members.
2. Individuals need assistance with health, developmental and life cycle
crises/concerns.
Guiding Principles:
1. Good health is in large part a function of the assumption of the
responsibility for health by the individual.
2. Individuals, parents and family members are experts in the health of
themselves and families. In order to utilize this expertise they must
have access to useful information and willing partners in the health
profession and the community at large.
3. Making better decisions requires access to information which is
trustworthy, comprehensible, valuable and personalized. It must
respond to a specific interest, concern, or problem, and must
reinforce specific actions which, over time, may be taken to solve
these problems, maintain health and promote well-being.
4. Focus must be on information exchange, with an emphasis on
sharing of experience, insight, expertise, and knowledge to enhance
self-efficacy, support health decision-making, and reinforce positive
actions (on the part of individuals, families, professionals, plans and
policy makers).
5. An individual (or family) who is enabled to make better decisions in
his or her (or family's) interest can improve health and moderate
costs.
6. The questions posed, information shared, and outcomes of specific
actions should continually influence the design of the system and
contribute to improving the quality of health care and practice of
medicine.102
Access and Health Literacy
Not all patients can read. Those who cannot face even more difficulties in dealing
with the health care system:
The healthcare system in the United States is facing a recipe for disaster.
There is no more vulnerable population in this country than people who don’t
read. This group has the worst health, the least knowledge of healthpromoting behaviors, and the fewest socio-economic resources to deal with
those problems… our preliminary analysis shows that patients with
inadequate literacy skills have a 50% increased risk of hospitalization,
compared with patients who had adequate literacy skills…we can only
speculate on the causes of excessive hospitalizations in this vulnerable
population. Less knowledge of self-care options, worse general health
102 Levine, S. Robert and others, Progressive Policy Institute, Family Reunion 7 – Families and Health,
Spring 1998
89
behaviors, and less ability to negotiate today’s complex healthcare system
may all be major factors in the equation…
About 36 million people are eligible for Medicare in the United States…16
million [of the elderly] are functionally illiterate. The average hospitalization
cost per person per year for Medicare patients is $2,262…one might assume
that a 25% to 50% increase in the cost of hospitalizations for Medicare
patients with inadequate literacy skills. If we accept these assumptions,
increased hospitalization costs directly attributable to inadequate health
literacy could total $8 to $15 billion per year.103
One way of addressing this problem is to use interactive video technology.
Information could be communicated in short video clips, rather than just printed
instructions. Instead of viewing an active medication list, the individual could view
videos of the drugs, with spoken instructions.
The information of the Health e-Vault could be communicated with video,
including video mail.
The Role of Trust
A critical component of the vault is the notion of trust.
Computers and communications have triggered massive changes in our
understanding of “the system,” and the information age is leading to revolutionary
changes in control and authority in our society. Information is bought and sold as a
commodity. We’ve moved from “Knowledge is power” to “Access to information is
power.” Access to health information by the consumer is rapidly growing. An individual
with a rare disease may have much more time and energy to research the problem than a
physician allotted 12 minutes per patient.
Patients offer a tremendous amount of information to their physician; the bargain
is that the physician is expected to use that information for their benefit. However, as we
weave an ever-growing web of interlocking financial, social, economic, and personal
issues to health information, it is no longer possible to allow for this web to be controlled
by “the system.” Each individual has unique needs and concerns, there is no “one correct
way” to decide who is privileged to see what information.
Dr. Denise Nagel of the National Coalition for Patients Rights worried that the
current system is turning the doctor’s office into fishbowl instead of a safe harbor. The
goal of the new system is to provide that private room in cyberspace. A trusted third
party mediates access to an individual’s health information outside of the source
institutions. Access to an individual’s information is under the control and visibility of
that individual. Information may be collected into zones, which contain independent
areas with separate access privileges and communities of interest.
For example, Mr. Smith may want to share his active medication list with his
primary physician, pharmacy A, optometrist, dentist, and chiropractor. One day while
picking up a prescription, he overheard two pharmacists gossiping about a customer, and
realized that they may someday talk about his prescription the same way. He decided to
move to pharmacy B, and terminated pharmacy A’s access to his account. Pharmacy A
still has their own internal records, but they will have not access to his broader records.
Baker, David W. “The Impact of Health Literacy on Patient’s Overall Health and Their Use of
Healthcare Services,” in the Procedings of “Health Literacy, A National Conference”, June 1997,
sponsored by Center for Health Care Strategies, Inc.
103
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His daughter has been diagnosed with a rare disease, and he searches the Internet
for information. He finds an on line support group for this particular disease, who have
formed a very active community of those afflicted with this disease. He finds a
researcher, Dr. Jones, who is interested in his daughter’s case. After checking with Dr.
Jones HealthSpace seal to determine that he is from a recognized university, John decides
to admit Dr. Jones to his daughter’s account.
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The World-Wide Web and the Demise of the Clockwork Universe.104
300 years ago, Newton, Laplace, and Descartes introduced a revolution in
scientific thinking: with sufficiently precise understanding of initial conditions, the future
could be predicted by applying a simple set of natural laws. Although this “clockwork
universe” paradigm has long since been discredited by physicists, its intellectual
descendants still haunt our institutions, bureaucracies, economies, universities, software
development methodologies, and general zeitgeist. If only our policies and procedures,
economic measures, university education, software metrics, and social indicators were
more precise, we could apply a few simple “natural laws” and predict the future....
The scientific revolution of the past 300 years has undeniably yielded many
tangible benefits. However, from many viewpoints, the clockwork universe mindset is
proving insufficient to meet the real-world needs and expectations. We have learned
from chaos theory that we cannot simple collect ever more precise initial conditions to
predict the behavior of a system. We have learned from software engineering efforts that
no matter how hard we try to establish the perfect initial conditions for software
development (requirements) that we cannot generate a smooth, laminar flow software
development process.
There are many indicators which indicate that the reductionistic frenzy which has
driven the lust for precision in our times is dissipating. Chaos theory, non linear
dynamics, complex adaptive systems, genetic algorithms, artificial life, virtual reality,
complexity theory, simulation, emergent computation, and fuzzy set theory are but a few
of the disciplines affecting this. Rather than seeing the world as a set of complex initial
conditions and simple laws, this new world view sees the things in a much more adaptive,
“organic” manner. Systems begin with a relatively simple initial condition: a primordial
soup, so to speak. They then evolve over time according to rules of selection and fitness.
The world is not necessarily so deterministic. Positive feedback loops create
unpredictable emergent properties. Autocatalytic organizations emerge which appear to
violate the rules of entropy: they spontaneously exhibit increasing complexity.
This paper discusses the problem of managing a large scale enterprise-wide
information system. It builds on the technology embedded in the World Wide Web
(WWW), complex adaptive systems, and object-oriented technologies to provide a
framework within which an enterprise may construct an adaptive, evolutionary system
which meets its needs in a cost effective manner.
The traditional “clockwork universe” view of the world which was advanced by
Newton and Laplace was based on the execution of a few simple laws (e.g., F=MA),
starting from complex initial conditions (the position and momenta of all particles in the
universe). Although physicists gave up on this idea at the time of Heisenberg, its analog
104
Munnecke, Tom, Presented at the Second Annual Conference on Mosaic and the World Wide Web
Chicago, October, 1994
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has carried forth in many other areas of thought. This “divide and conquer” mindset has
lead us to divide and conquere organizations in economics, other sciences, education,
medicine, and information technologies, as well as other places.
Computer science has been subject to this kind of thinking, which has resulted in
many different levels of reductionistic thinking: hierarchical decomposition, structured
analysis and programming, various systems engineering approaches, etc. These
approaches work in some domains which can be characterized as having complex initial
conditions (expressed as requirements), executed with simple laws (the variants of
structured programming). We “normalize” our data by structuring it into densely packed
rectangular tables; data which doesn’t fit these rigid conditions are considered
“unnormalized”, which is somewhat akin to the pope calling all people not in his church
“non-catholics.” Indeed, the prefix “hier” means sacred or holy. Hierarchical
decomposition of systems into functional components has become the sacred quest of
today’s computer systems architects.
The model presented in this paper presents a radically different view of the
information system. It begins with simple initial conditions: as simple as possible, and
then allows the system to evolve as a complex adaptive system which is adapting to its
environment. Hollandidescribes these classes of systems:
Many systems of high interest to humankind — economics, political
organizations, games, ecologies, the central nervous system, developing
organisms, biological evolution, etc. — rarely, if ever, “settle down” to some
repetitive or other easily described pattern. Such systems are
intrinsically dynamic (When they settle down they are “dead” or
uninteresting)
far from a global optimum (There is always room for further improvement,
though the system may perform quite well in a comparative sense.)
continually adapting to new circumstances (The strategies or structures that
determine the system’s interactions continually change, often with
accompanying improvements in performance...
A brief inspection shows that all the systems mentioned involve a large
number of “agents” adapting to each other in a complex network of local,
nonlinear interactions. It is convenient to label these systems as adaptive
nonlinear networks (ANN’s hereafter)....How does an ANN adapt to a
perpetually novel environment that continually offers opportunities for further
improvement? Three interacting subsystems must be defined in order to
pursue an answer to this question: (1) the environment in which the system
acts, (2) the structures that generate the system’s actions, and (3) the
mechanisms that progressively adapt the system’s structures to the
environment.
Adaptation in Information Systems
One can argue the case that adaptation is one of the critical roles in information
systems.ii Many of the common activities associated with information systems can be
considered different manifestations of the same property: adaptability:
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Adaptability over:
Is called:
Time
Sites
Users
Operating Systems, Hardware
Changing Requirements
(environment)
Internal Changes
Data Storage Techniques
Maintenance
Portability
Security
“Open systems”
Flexibility
Configuration Management
Data Independence
Thus, the bulk of the expense of traditional information systems can seen to be the
cost of adaptation. In this paper we will call these systems manually adaptive: each
instance of adaptation is handled via special intervention by humans. Entire departments
in organizations are dedicated to this function. Given that their very existence is based on
their manual adaptation of traditional systems, it is unlikely that self-adapting systems
will emerge from within them. It is much like expecting to get out of hole by digging it
deeper.
Linearity and Nonlinearity
Traditional information systems also tended to be linear. We started with a
thorough set of requirements, from which we derived specifications which drove the
programming. Programs were unit tested, system tested, and then delivered as a
complete system. The system was then turned over to maintenance processing. These
systems flowed from one stage to another, sometimes called the waterfall approach.
Campbelliiidiscusses linearity:
Putting it naively, [in linear systems] one breaks the problem into many small pieces,
then adds the separate solutions to get the solution to the whole problem. In contrast, two
solutions of a nonlinear equation cannot be added together to form another
solution...Thus, one must consider a nonlinear problem in toto; one cannot—at least not
obviously—break the problem into small subproblems and add their solutions. It is
therefore not surprising that no general analytic approach exists for solving typical
nonlinear equations [italics added]
For instance, when water flows through a pipe at low velocity, its motion is
laminar and is characteristic of linear behavior: regular, predictable, and describable in
simple analytic mathematical terms. However, when the velocity exceeds a critical
value, the motion becomes turbulent, with localized eddies moving in a complicated,
irregular, and erratic way that typifies nonlinear behavior. By reflecting on this, we can
isolate at least three characteristics that distinguish linear and nonlinear physical
phenomena.
First, the motion itself is qualitatively different. Linear systems typically show
smooth, regular motion in space and time that can be described in terms of well behaved
94
functions. Nonlinear systems, however, often show transitions from smooth motion to
chaotic, erratic, or, as we shall see later, even apparently random behavior...
Second, the response of a linear system to small changes in its parameters or to
external stimulation is usually smooth and in direct proportion to the stimulation. But for
nonlinear systems, a small change in the parameters can produce an enormous qualitative
difference in the motion...
Third, a localized “lump” or pulse, in a linear system will normally decay by
spreading out as time progresses...In contrast, nonlinear systems can have highly
coherent, stable localized structures—such as eddies in turbulent flow— that persist
either for long times or, in some idealized mathematical models, for all time. This
remarkable order reflected by these persistent, coherent structures stands in sharp
contrast to the irregular, erratic motion that they themselves can undergo.
Perhaps Frederick Brooks summarized this most succinctly: “nine women can’t
make a baby in one month.”iv Countless information systems have been planned as the
smooth, laminar flow of subprojects down the waterfall of systems implementation, only
to discover turbulence, eddies, and erratic responses to small changes in requirements.
These hallmarks of nonlinear systems are typically met with great dismay and generate a
response of renewed efforts to force the system to a linear flow with greater levels of
precision, adherence to the processes and structures which failed in the first place.
The “divide and conquer” linear thought process has assumed that one can
decompose a system into pieces, program each piece, and then put them back together
again to make a whole. But this is not the case with nonlinear systems. Just like Humpty
Dumpty, things which are broken into pieces cannot necessarily be reassembled into a
whole.
Another problem comes into play with hierarchical decomposition: point of view.
The “hier” in hierarchical reflects the authoritative point of view from which the problem
is decomposed. This point of view is typically a department manager, whose function is
being automated by the computer. As all the departments in an organization are
automated, these points of view are encrusted into “stovepipe” systems, each
programmed to the needs of the departments. Eventually, there is an initiative to have an
“integrated” system, which somehow interfaces all of these divergent points of view.
Ironically, this is typically just another point of view, and adds to the confusion, rather
than solving the problem.v One may as well try to pick up several fallen Humptys
simultaneously.
An analogy to the problem might be to ask each of the department heads to create
an outline of their organization’s behavior as they see it. The top left hand corner of each
outline represents the point of view of the manager. Managers may start their outlines
with the president, the customer, a product, a function, geographic location, chart of
accounts, or other aspect of the organization. There is no right or wrong outline to their
views; they are realistic representations of the world as they see it.
Now, suppose you were asked to “integrate” all these divergent outlines of the
organization. “We are a single, integrated organization,” you are told, and your job is to
weed out the duplications and come up with the one true outline of the organization. You
are faced with an impossible task. The organization from the point of view of the
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customer service representative is different from the point of view of the accountant. But
if you try to put “customer service” and “accounting” as two subheadings under
“company,” you end up with much duplication. If you try to interleave the outlines,
selecting sections from each, you become frustrated that you can’t take things out of
context from one outline and simply insert them into another. As the number of outlines
(decomposition points of view) increases, the problem becomes geometrically more
difficult. Yet this is the state of many of our corporate information systems today,
The information systems industry has been butting its head against this wall for 25 years,
so much that it is now an ingrained behavior. So much so that experienced managers
seek out the wall, place their head against it, and then complain about how hard it is to
get any forward motion.
Complex Initial Conditions, Simple Execution
At the core of the traditional approach is the assumption that someone can come
up with a consistent set of requirements, which can then be decomposed into
specifications and linear thought processes. The system is really what is contained in the
documentation or contract specifications. People go to great lengths to insure that the
requirements are exactly what the user wants. Requirements become an entity unto
themselves, a focal point of litigious contention in contract work. Systems analysts
assume that people who have never seen the system operate can examine paper
definitions of the system and comprehend the operation of the system in their setting.
Design methodologies assume that there is a single overiding point of view which drives
the entire system.
Most information systems don’t conform to this simplistic linear model. It may
be impossible to elicit the requirements of a system sufficient to produce specifications.
Users may not know what they want until they see it. External forces such as
governmental regulations may provide the small change which generates enormous
change in the system behavior. Once the system is installed, it may influence the users’
behavior in such a way as to invalidate some of the requirements. The development
process may take so long that the organization changes, markets change, or more pressing
priorities arise. All in all, information systems development is a very turbulent,
unpredictable process, no matter how hard we try to linearize it.
WWW is an Example of a Complex Adaptive Information System.
The WWW and the Internet are outstanding counterexamples to this. Over the
past 25 years, the Internet has grown at an amazing rate; no one knows exactly how large
it is or how much traffic it really carries. The Internet was not programmed according to
specifications derived from requirements; it evolved. The Internet Engineering Task
Force (IETF) works from a distinctly nonlinear motto: “rough consensus, running code,
vi
” which is a concise statement of the fitness function for survival of new ideas on the
Internet. The Internet clearly conforms to Holland’s description of complex systems:
intrinsically dynamic, far from a global optimum, and continually adapting to new
circumstances.
How is it that the Internet continues to thrive and spontaneously produce new
emergent systems such as the World Wide Web and Mosaic? The Internet is surely one
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of the most massive intellectual adventures of our century, but how can this massive,
complex system survive without central authority and control? What accounts for this
vitality?
The Internet cannot be explained in terms of linear concepts. The whole is greater
than the sum of its parts. One cannot study the TCP/IP standard and understand the
Internet’s behavior any more than one can study an ant and understand the ant colony’s
behavior.
The Internet must be understood in nonlinear, evolutionary terms. It is an organic
process: successful ideas are replicated; unsuccessful ones die away. One model might
be to consider the Internet to be one continuous usability test. Modifications which are
usable (measured by the fact that they are used) propogate and prosper on the net. These
changes, in the model of Jonas Salk, are “morphic.”vii Changes which absorb more
resources than they produce are “entropic” and soon disappear from the Internet
landscape.
Designing Complex Adaptive Information Systems
Although it is easy to look back and understand the success of the Internet over the years,
it is somewhat more difficult to look ahead and plan systems with the same propensity to
spawn emergent properties. First and foremost, however, is the need to consider the
nonlinear aspects of the system. A cookbook for this might read:

Minimize requirements. Your users do not know what they want until they see
it. They can’t tell you in advance what they want. Provide the minimum set of
requirements to define the “primordial soup” from which the system will evolve.
 The system is its own definition. The requirements which can be reduced to
linear paper format are not the system. A nonlinear system is only self-definable.
This may appear to be a circular definition. It is.
 Define a fitness function. When things change, what defines whether the change
is for the better or the worse? This function will drive the evolution of the
system. Choose it carefully.
 Define the environment. Draw a circle. Inside this circle, name all the possible
users of the system, other systems which may interact with this system. This
circle is the environment of the system.
 Think Scale (alternatively, Ignore Scale). What are the characteristics of your
system which are independent of scale? Apply these intrinsics to your system as
it grows.
 Think Adaptation. Is maintaining a system really different than porting it to a
different site? Why invoke different technologies, or even design them to be
different?
 Think of Emergent Properties. Although you may not know what may come
from the system, at least you can be ready to acknowledge them when they
appear.
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 Create Simple Initial Conditions. “Simplicate and add lightness” to the initial
conditions of your system to all the evolutionary process to start. The important
thing is to start the evolutionary process.
 Establish the Evolutionary Process. Even if payoff is intermittant or sparse, it
is important to feedback the results of the fitness function to the system’s
evolution.
 Consider Adaptation to be a Pervasive Process. Assume that nothing is
forever, that all elements of your system must adapt, including the adaptation
process.
Point of View
It is essential to realize that any hierarchical organization is decomposed from a
Point of View (POV). The top left hand corner of an outline the or the top of a
organization chart define the decompositional process for the transactions which occur in
the organization. This POV may or may not reflect the best organization for a given
function to be performed.
Inverted Perspective
Breaking out of an organization’s point of view can be a difficult process. There
are too many pressures for maintaining the hierarchy for any but the boldest to venture
out. Richard Feynman and Jonas Salk, however, made tremendous scientific inroads by
using a technique of inverted perspective, which views the system from the perspective of
one of the objects in it, rather that the “top down” decompositional view:
Feynman’s essential insight was to place himself once again in the electron,
to see what the electron would do at light speed. He would see the protons
flashing toward himand they were therefore flattened relativistically into
pancakes. Relativity also slowed their internal clocks, in effect, and from the
electron’s point of view, froze the partons into immobility. His scheme
reduced the messy interaction of an electron with a fog of different particles
to a much simpler interaction of an electron with a single pointlike parton
emerging from fog...The experimenters grasped it instantly.viii
Jonas Salk wrote of a similar thought process:
When I observed phenomena in the laboratory that I did not understand, I
would also ask questions as if interrogating myself: “Why would I do if I were
a virus or a cancer cell, or the immune system?” Before long, this internal
dialogue became second nature to me; I found that my mind worked this way
all the time.ix
Inverted perspective can be used as a tool for breaking out of the decompositional
process embedded in our computer systems as well. For example, the majority of health
care computing resources over the past 25 years has been largely devoted to increasing
the granularity and efficiency of the billing process. This is a very important process
from the point of view of the hospital’s “bottom line”, and enabled them to charge for
98
things such as boxes of tissues which would not have been possible a generation ago.
From the inverted perspective of the object in the system, i.e., the patient, however, this
may not be the most critical breakdown of the information. Much like Feynman’s view
of an electron interacting with a “messy fog” of particles, an inverted perspective of a
human being in the health care system would be an individual working with a “messy
fog” of information from hospitals, physicians, dentists, chiropractors, fitness centers,
personal information, and other sources.
This could have profound impact on the way we see things. For example, the
“bottom line” of hospitals in the United States of hospitals is increased by several billions
of dollars yearly by providing neonatal intensive care. Five hundred gram premature
babies are saved, sometimes at a cost of a million dollars. From the perspective of the
bottom line of the hospital, this is a very successful business. However, viewed from the
inverted perspective of the mother or child, it would be far preferable to carry the baby to
full term and have a normal birth. Many of the mothers delivering premature babies are
poor and are not able to afford prenatal health care. Unfortunately, the benefits of
providing prenatal health care do not show up on the bottom line of the organizations
which benefit from providing neonatal intensive care.
Transactional and Transformational Systems
We could classify interaction in the context of a hierarchical structure as
consisting of transactions. Systems built around transactions tend to be linear, for
example, the bottom line of an accounting system is the linear sum of all transactions in
the organization. They tend to be reduced to a single scalar quantity, (money being the
most common), to simplify the linear “roll up” process. This quantity is measured in the
currency of the hierarchy, from the point of view of the hierarchy. Transactions tend to
be synchronized, with much hierarchical control of which transactions occur in what
sequence. A banking system is a classical example of this type of system. Banking
transactions are defined in terms of money, conform to the accounting system and
procedures of the bank, and are carefully monitored to insure that they are executed in the
proper sequence. ATM machines are a highly visible product of this model of operation.
At the other end of the spectrum we have interaction which is based on web
structures, consisting of transformations. There may be no hierarchical structure to the
system at all, only browsing and explicit linking between objects which are collected in a
“flat” pool. Interactions with the system cannot be characterized in a single scalar
quantity, as is the case with transactional systems. The system is not linear nor
synchronized, nor is it under the control of a single point of view. Observers have their
own points of view their own inverted perspective. The system as a whole becomes a
complex adaptive one, evolving over time as we have seen with the WWW.
References
Holland, John H., “Using Classifier Systems to Study Adaptive Nonlinear Networks”, in Lectures in the
Science of Complexity, Sante Fe Institute Studies in the Sciences of Complexity, Ed. D. Stein,
Addison-Wesley Longman, 1989
ii
Munnecke, “Linguistic Requirements of Adaptive Software”, unpublished, 1982, available on the author’s
FTP server munnecke.saic.com, 1982
i
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Campbell, David, “Overview of Nonlinear Science: from Paradigms to Practicalities”, in Lectures in the
Science of Complexity, Sante Fe Institute Studies in the Sciences of Complexity, Ed. D. Stein,
Addison-Wesley Longman, 1989
iv
Brooks, Frederick, The Mythical Man-Month, Addison Wesley, 1978
v
I have noticed this phenomenon in the design of hospital information systems. Departments such as
Laboratory, Pharmacy, Accounts Receivable, etc, each install independent systems. As the costs of
duplication are realized, an “integrated approach” is called for. Sometimes, physicians ask for a system
from their viewpoint (yet another point of view). But the fundamental problem—an infrastructure
incapable of handling the conflicting information needs of its users, and the basic nonlinearity of the
system—is ignored.
vi
Jon Postel, one of pioneers of the Internet, personal communication, August, 1993.
vii
Salk, Jonas, Anatomy of Reality, Columbia University Press, 1983
viii
Gleick, James, Genius, The Life and Science of Richard Feynman,Vintage Books, New York, 1992, p
394
ix
Salk, p. 7
iii
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