Laying the foundation
for transforming U.S.
healthcare
David Lansky, Ph.D.
Markle Foundation
May 3, 2005
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The Challenge
- (IOM)
- (NCQA)
- (McGlynn et al)
- (CECS at
Dartmouth)
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IOM’s Six “Aims” for U.S. Health Care
 Safe—avoiding injuries to patients from the care that is intended
to help them.
 Effective—providing services based on scientific knowledge to all
who could benefit and refraining from providing services to those
not likely to benefit (avoiding underuse and overuse,
respectively).
 Patient-centered—providing care that is respectful of and
responsive to individual patient preferences, needs, and values
and ensuring that patient values guide all clinical decisions.
 Timely—reducing waits and sometimes harmful delays for both
those who receive and those who give care.
 Efficient—avoiding waste, including waste of equipment, supplies,
ideas, and energy.
 Equitable—providing care that does not vary in quality because of
personal characteristics such as gender, ethnicity, geographic
location, and socioeconomic status.
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IOM’s Ten “Design Rules” for U.S. Health Care
1. Care based on continuous healing relationships.
2. Customization based on patient needs and values.
3. The patient as the source of control.
4. Shared knowledge and the free flow of information.
5. Evidence-based decision making.
6. Safety as a system property.
7. The need for transparency.
8. Anticipation of needs.
9. Continuous decrease in waste.
10. Cooperation among clinicians.
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The “Design Rules” that depend on patients
1. Care based on continuous healing relationships.
2. Customization based on patient needs and values.
3. The patient as the source of control.
4. Shared knowledge and the free flow of information.
5. Evidence-based decision making.
6. Safety as a system property.
7. The need for transparency.
8. Anticipation of needs.
9. Continuous decrease in waste.
10. Cooperation among clinicians.
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The politicians’ perspective
“To protect patients and improve care and reduce cost, we need a
system where everyone has their own personal electronic medical
record that they control and they can give a doctor when they need
to.”
- President Bush
At American Association of Community Colleges Annual Convention April 26,
2004
“We should adopt the model of a ‘personal health record’ controlled by
the patient, who could use it not only to access the latest reliable
health information on the Internet but also to record weight and
blood sugar and to receive daily reminders to take asthma or
cholesterol medication.”
- Senator Hillary Clinton
NY Times, April 18, 2004
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Stages of health care transformation?
1. Adoption of electronic health records
2. Interoperability of electronic health
records
3. Proliferation of personal health records
4. Shift of control to patients and families
5. Redistribution of technology to the
patient and family
6. Reallocation of roles, responsibilities and
… money?
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Extent of Clinical IT Adoption – CDC estimates
 Hospital Emergency Depts.
31%
 Hospital Outpatient Depts.
27%
 Physician offices
17%
 Physician CPOE
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8%
What will it take to increase adoption?
 Financial incentives to end-users
(“business case”)

CMS

Pay for performance/pay for use

Adjustments to Stark
 Confidence in product stability,
interoperability
 Cultural changes: MD, public
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The interoperability assumptions
 A future of better, more efficient care can be
accomplished through “dynamic connectivity”
that allows information to move:

Where it’s needed

When it’s needed

In a private and secure manner
 Achieving this goal will require public and private
sector collaboration
 A ‘roadmap’ is needed to chart the course
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What is Connecting for Health?
• Broad-based, public-private coalition
• More than 100 collaborators
— Providers (AMA, ACP, AAFP, ACEP, Presbyterian,
Partners)
— Patients (IAM, NCCS)
— Suppliers (RxHub, Surescripts, J&J, Pfizer)
— Payers (CAQH, AHIP, BCBSA, GE, Leapfrog, PBGH)
— Accreditors (NCQA, JCAHO, URAC)
— Government agencies (CMS, AHRQ, CDC, FDA, VA)
— Researchers (AHRQ, CDC, AMIA)
— IT vendors (Siemens, CSC, IBM, Microsoft, Allscripts)
• Founded and supported by Markle Foundation,
with additional support from Robert Wood
Johnson Foundation
• See www.connectingforhealth.org
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Purpose of Connecting for Health
Catalyze changes on a national basis to create
an interconnected, electronic health
information infrastructure to support better
health & healthcare
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The Connecting for Health Approach
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
Decentralized

Federated: network of networks

No national “Health ID”

Bottom up and top down

Incremental: all levels of sophistication

Scalable and evolvable

No 'rip and replace’

Patient control
Six Elements for a National Health
Information Environment
1. An environment – not a network
2. A common framework
3. Standards and Policies Entity
4. Record Locator Service
5. Patient control
6. Financing and incentives
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Proposed architecture is federated and decentralized:
Once records are located, the health information flows
Peer-to-Peer (with patient’s authorization)
FIND
The Markle Foundation
Source
sends index
information
Connecting for Health
Provider asks if there
are records for
his/her patient
Index sends
location of
any records
Patient Index
GET
Patients
Patients
Providers
Hospitals
Diagnostic
Services
Providers
Hospitals
Individual
Care
Providers
Payors
Public Health
Providers
Provider asks
for and receives
records
Message
Transfer
Source: © 2004 The Markle Foundation Graphic adapted from Tom Benthin original.
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Data
Sources
Records
are sent to
Provider
Diagnostic
Services
Payors
Public Health
Providers
The architecture supports point of care information sharing
and population-based reporting
FIND
Connecting for Health
Source
sends index
information
The Markle Foundation
Provider asks if there
are records for
his/her patient
Index sends
location of
any records
Patient Index
GET
Patients
Patients
Providers
Hospitals
Diagnostic
Services
Providers
Hospitals
Individual
Care
Providers
Payors
Provider asks
for and receives
records
Public Health
Providers
Message
Transfer
SEND
De-Identified
Data
Public
Health
Reporting
Router
Source: © 2004 The Markle Foundation Graphic adapted from Tom Benthin original.
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Data
Sources
Records
are sent to
Provider
Source may
push data for
reporting
Diagnostic
Services
Payors
Public Health
Providers
Element #1 – an environment, not a
network
U.S. can create an environment with
specific characteristics, so that any
appropriate and authorized entity can
participate in information sharing – a
doctor, an individual, a pharmacy, a
hospital, a public health agency
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Element #2 – a Common Framework
This environment will be enabled by
general adoption of a set of specific,
critical tools, including technical standards
for exchanging clinical information, explicit
policies for how information is handled,
and uniform methods for linking
information accurately and securely.
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The Proposed Stack of Standards
 (Local application logic)

Health-care specific message contents

Envelope with delivery instructions

"On the wire" encryption

Transport and low-level application logic

Logical network
 (Physical network)
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Needed Security Policies
 Technical
 Physical
 Mirroring
 Incomplete data/liability
 Enforcement policy
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Policy Resources in Development
 Backgrounder on core privacy and security principles
 General guidance document—includes minimum necessary
participation in governance and structure, key stakeholder
requirements, and general approaches
 Community sharing “rules of the road” document
 Model patient consent language
 Model Data Use and Access language for creating a
multilateral agreement at the regional/ community level
 Model Privacy Practices
 Identification of areas where state-specific accommodations
needed
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Element #3 – a Standards and Policies
Entity
This toolkit must be uniform, so must be defined
by a single, national entity – the Standards and
Policies Entity – which reflects public and private
sector participation, is transparent, accountable,
and operates in the public interest.
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Designing a Standards and Policy Entity
 Charter
 Participation
 Authority
 Leadership
 Financing
 Accountability
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What will it take to promote interoperability?
 Financial incentives to end-users (“business
case”)

Value in “knowing” rather than nonknowing

CMS

Pay for performance/pay for use
 Public demand and public trust
 Universally accepted standards, policies, and
methods (SPE)
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Potential of personal health records
 Giving individuals access to and control over their
personal health information enables:



More reliable care; e.g., in emergency situations
Greater efficiency, less duplication of tests and quicker
access

Improved satisfaction, lower cost and greater choice

Improved health care quality and safety

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Patients better able to maintain health and manage their
care
More effective communication and collaboration between
patients, doctors, pharmacies, and others
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What is a personal health record?
 No good answer today
 Some of its attributes:
 Person controls own PHR
 Contains information from entire lifetime
 Contains information from all providers and
self
 Accessible from any place, at any time
 Private and secure
 Transparent – strong audit trail
 Interactive across one’s health care network
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Retrieving your health information
Pharmacy Q
Hospital X
Pharmacy R
Hospital Y
Laboratory
School Nurse
Payer Data Center
(health plan,
Medicare)
Primary Care
Doctor
Specialist
Doctor
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Home
Monitoring
Device
The Person as an Information Hub
Pharmacy Q
Hospital X
Hospital
System
Data Hub
Hospital Y
Laboratory
Primary Care
Doctor
Specialist
Doctor
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Pharmacy R
Pharmacy
Data Hub
School Nurse
Payer Data Center
(health plan,
Medicare)
Personal
Health
Record
Home
Monitoring
Device
Degree of interest in PHR
 High reported desire for specific functions:
 Email your doctor – 75%
 See test results – 63%
 Look for mistakes in my record – 69%
 Principal interest by caregivers, frequent health system
users (chronic illness, elderly), computer savvy
 Primarily offered as portal by large delivery systems
 Loyalty marketing
 Offering only a ‘view’ of EMR
 “Untethered” PHRs not proving viable
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Current interest in PHR tools
 Thirty five percent of respondents would use seven or more
features of a PHR today if it were available.
 Almost all respondents (91 percent) are very concerned
about their privacy and keeping their health information
secure. However, most people believe that technology
provides appropriate protections.
 People who suffer from chronic illness and/or are frequent
health care users are less concerned about privacy and
security. For example, 41% of the healthy would not want
to receive lab results online due to privacy concerns,
compared with 36% of those with chronic conditions.
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And then what . . . ?
 In 2015:

Widespread health IT adoption

Interoperability

Personal health records
 And …
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
“Smart homes”

Genetic testing

Personalized medicines

Consumer managed financing
Implications for research organizations
 Opportunities for real-time data collection
from patients and from providers?
 Implications of “patient control” over data
access?
 How to control variables in research design
in real-time environment?
 Economics of research across distributed
data collection network – who pays when
infrastructure pre-exists?
 And many more….?
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David Lansky, Ph.D.
Markle Foundation
dlansky@markle.org
www.connectingforhealth.org
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