DRAFT
Electronic Health Record Exchanges to Manage Healthcare Super Utilizers
1. Introduction
Around the United States there are a number of programs which have exploited the
use of electronic health data and other technologies in a quest to better manage the
health care of poor, uninsured or underinsured patients who are super utilizers of
health care services. These programs are heeding the call to develop new models of
care that keep patients healthier and out of high cost health environments, such as
hospitals.1 Many initiatives seek to better integrate community and social services
with medical case management. One novel subset of these integrated care initiatives
are those that have succeeded in using electronic health records and other
information technologies in their efforts to coordinate and improve care.
In this chapter we explore what technologies and organizational structures are used
by some of these novel healthcare initiatives to identify, monitor and provide better
care for health care super utilizers. What technologies were used? What institutions
were involved or created? What policies directly or indirectly incentivized the use
of novel technologies and organizational structures? What can local governments
do to accelerate such information technology use for coordinated community care?
The chapter is based on a literature review of the small number of flagship
healthcare delivery models which use uses information technologies to better
combine medical and social services.
New approaches to healthcare delivery for super-utilizers are of course part of
much broader changes in the social, economic and political landscape of health care.
All health care providers, serving varied populations across the country, are being
challenged to find models of health care delivery that yield higher quality care for
lesser cost to the whole population, which is frequently referred to as the “Triple
Aim.”2
How to transition the US healthcare system, or even single organizations therein, to
deliver higher return on investments has been an intense policy debate in the
United States for decades.3 Proposed solutions to our health care crisis span a wide
gamut of policy tools, including: financial incentives for health care providers and
individuals, changes to health care organizational structures and procedures,
For example see the Institute for Healthcare Improvement (2013), The IHI Triple Aim, Cambridge,
MA: IHI, March 15. Available from:
https://www.ihi.org/offerings/Initiatives/TripleAim/Pages/default.aspx
2 Donald M. Berwick, Thomas W. Nolan, and John Whittington (2008). “The Triple Aim: Care, Health,
And Cost.” Health Affaris, May, vol. 27, pp.:759-769. doi:10.1377/hlthaff.27.3.759
3 The Clinton Administration’s failed efforts at health care reform took place in the 1990s as did the
national experiment with Managed Care Organizations.
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healthcare workforce education and licensing, urban planning, individual behavioral
changes related to nutrition and activity levels, and even urban planning.
Needless to say, then, this chapter will take a rather narrow focus on a set of
technological and organizational innovations adopted by some community health
care providers. While we will discuss some of the health care quality metrics of
these initiatives, we will not compare the effectiveness of the different models of
care, or discuss their financial sustainability or scalability. The initiatives described
here are simply recognized as alternatives to the standard model of care, but we are
not yet in a position to evaluate them. They are promising experiments that address
the needs of poor, often uninsured, patients with chronic conditions in a more
continuous and coordinated manner. They are understood to be helping patients
adhere to treatments and behaviors and thus helping to reduce expensive hospital
emergency department use.
2. What is the problem with the over use of Emergency care?
Vulnerable populations include people with (frequently multiple) chronic complex
conditions, such as diabetes or asthma, whose conditions are poorly managed; the
frail elderly; and people without health insurance who seek medical care only when
their condition becomes acute. These diverse groups of people are more likely to
resort to the use of emergency departments at hospitals for their medical
conditions. [Figure & cite needed.]
For over two decades, hospitals have been obligated to provide emergency care for
any patient that visits the emergency department (ED), regardless of insurance
coverage or ability to pay.4 The expense of uncompensated emergency department
care falls primarily on the receiving hospitals, although there are some offsetting
federal funds from Medicare.5 Emergency department visits are far more costly
than regular physician visits and can result in the ordering of multiple tests and
even hospital stays. Some of these ED visits might be averted if vulnerable
populations had easier access to preventive, primary or specialist care.6
The problem is not simply the fact that ED visits are more expensive than primary
care visits. Vulnerable populations tend to include a sub population of super
The Emergency Medical Treatment and Labor Act (EMTALA) was enacted in 1986: it requires
hospitals to perform a clinical examination and to stabilize a patient if he or she presents with an
emergency condition, or to arrange a transfer that person to another facility, regardless of ability to
pay.
5 The federal government provides some offsets for hospitals serving a disproportionate number of
poor patients through the Medicare DSH (disproportionate share hospital) payment adjustments.,
which disburses about $11 billion per year to “safety net” hospitals.
6 According to P. J. Cunningham “About one-third of ED visits are classified as nonurgent or semiurgent, which suggests that the care sought during many of these visits could be provided in other
settings.” See Peter J. Cunningham (2006). “Medicaid/SCHIP Cuts And Hospital Emergency
Department Use.” Health Affairs, January, vol. 25 no. 1 237-247.
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utilizers, patients that are repeat user of emergency care. Sometimes repeat users
of ED return because the care is centralized and convenient (many hospitals, for
example, have translating services). Other repeat users do so because their
conditions are not controlled outside the hospital setting. They may be discharged
without follow up, access to other providers of care, or a support network to help
them manage their conditions. They may get redundant testing at multiple
hospitals.
We are living in a period of rising numbers of people with chronic conditions
including: diabetes, cardiac conditions, asthma, even cancer as “chronic” disease.
About 60 percent of the adult U.S. population had at least one chronic condition in
2005. One in four people have two or more chronic conditions. Chronic conditions
and obesity which is a risk factor for several chronic diseases, has added costs to the
US Healthcare system.7 But perhaps what this change in the health status of
Americans signals, is the need to shift from a healthcare system that has been
designed for acute episodes of care. As the president of the Center for Studying
Health System Change notes, “We’re pretty good at treating a heart attack, but not so
good at preventing and managing the underlying heart disease that leads to that
heart attack.”8
How large a problem is the inappropriate use of emergency department care? One
measure is the total charity and “bad debt” or uncompensated expenditures by
hospitals. In 2011, according to the American Hospital Association, $41.1 billion of
US hospitals’ total expenditures were for uncompensated care, (5.9% of total
expenditures).9 [Hospitals also argue that Medicare and Medicaid payments do not
cover their actual costs, by a total of $28 billion in 2010.]
In 2010, the year the Affordable Care Act was enacted, over 42 million Americans
and 11 million illegal aliens were without health insurance; in other words, over
15% of the population did not have regular access to affordable healthcare. In some
southern and western states, over 1 in 5 people were not covered.10 With the
passage of the ACA the number of uninsured figures should be reduced
substantially. However, the ACA, by design, expands the number of Medicaid
recipients, who statistically use emergency care at significantly higher rates than the
insured and even the uninsured.11 So, even with expanded population insurance
Alwyn Cassil (2003). “Rising Rates of Chronic Health Conditions: What Can Be Done?” Center for
Studying Health System Change, Issue Brief No. 125, November.
http://www.hschange.org/CONTENT/1027/1027.pdf
8 Alwyn Cassil (2003). “Rising Rates of Chronic Health Conditions: What Can Be Done?” Center for
Studying Health System Change, Issue Brief No. 125, November.
http://www.hschange.org/CONTENT/1027/1027.pdf
9 American Hospital Association (2013). AHA Uncompensated Hospital Care Cost Fact Sheet. Accessed:
http://www.aha.org/research/policy/finfactsheets.shtml
10 Texas, Florida, Nevada, New Mexico, Georgia according to the Kaiser Family Foundation. See The
Uninsured: A Primer, 2010.
11 Cunningham (2008). “More than one-third of Medicaid/SCHIP adult enrollees had an ED visit in
the previous year, compared with about 20 percent of both uninsured and privately insured adults.
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coverage, it is not clear that vulnerable populations will quickly migrate to non-ED
care.12
The ACA is an important policy because it extends insurance coverage, encourages
pay for performance and incentivizes new models of accountable care. But alone it
cannot guarantee that the health care system will suddenly be able to absorb care
for the expanded Medicaid rolls or the remainder of the vulnerable populations with
inadequately managed chronic conditions. The over reliance on emergency care is
thus likely to continue if there are not also accompanying social and organizational
changes that make outpatient care more affordable and accessible.
3. What can be done to try to reduce the use of Emergency care?
There are many possible approaches to reducing the inappropriate use of
emergency departments. Community care centers, mobile doctors’ offices, medical
homes, tele-health, e-health, better hospital discharge instructions and follow up…
[Expand.]
One novel solution, has been to use data about patient visits to ED in order to
identify those categories of people that might benefit from some form of
intervention, be it case management, referral to a community care center, or
targeted healthcare or social care follow up. Ideally, electronic health records could
be used to identify health care super utilizers or more broadly any patient who’s
care could be better managed. Electronic health records include information about
a patient’s demographic data, conditions, medications, test results, and care
received.13 But using identifiable health records is complicated because of privacy
restrictions, amongst discussed below.
In the early 2000s, Jeffrey Brenner, the founder of the Camden Coalition of
Healthcare Providers located in the poorest city in New Jersey, used billing data
from hospitals to create “hot spot” maps identifying the health characteristics of
individuals who ended up in Camden hospitals. Taking a page from police
department targeting of crime hotspots, Brenner identified a number of interesting
types of patients. For example, by looking at “locations where ambulances picked
up patients with fall injuries” he discovered that “a single building in central
Camden sent more people to the hospital with serious falls… than any other in the
city, resulting in almost three million dollars in health-care bills.”14 Of those
Overall, ED visits per adult Medicaid/SCHIP enrollee are 2.5–3 times those of privately insured and
uninsured adults.”
12 http://commonhealth.wbur.org/2011/08/safety-net-hospital-demand
13 The broad adoption of EHRs holds out many promises for better health care management but the
realization of those promises is uncertain.
14 Atul Gawande (2011). “The Hotspotters: Can we lower medical costs by giving the neediest
patients better care?” The New Yorker, January 24.
http://www.newyorker.com/reporting/2011/01/24/110124fa_fact_gawande?currentPage=1
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buildings in the city that accounted for the highest number and cost of hospital visits
one was a nursing home, another a low income housing tower.
The citywide health database Brenner created from the claims data of three Camden
hospitals showed that “50 percent of Camden residents visited a local emergency
department or hospital in a single year, twice the rate for the United States overall.
The majority of the visits were for preventable conditions that are treatable by a
primary care provider.”15 Most often people visited the ED for head colds, viral
infections, ear infections, and sore throats. Thirteen percent of the patients
accounted for 80 percent of hospital costs; 20 percent of the patients accounted for
90 percent of the costs.16 Just one percent the Camden population accounted for
thirty percent of its costs: out of one seventy seven thousand people who accessed
care, there less than 800 “super-utilizers.”17
What Brenner wanted to do was better understand the needs of the super utilizer
patients in Camden. Because of privacy restrictions that limit the transfer of
identified personal data, Brenner simply asked local doctors to refer their most
problematic patients to him and he visited them in order to find out why they
accumulated such high medical costs. In 2007 he founded the Camden Coalition of
Healthcare Providers whose mission was to improve care by keeping vulnerable
patients out of the hospital. The Camden Coalition provided a team based approach
to the management of care for individual patients, including doctors, nurses medical
assistants and social workers. They delivered a combination of personalized health
care consultation and coordination, as well as help applying for government
benefits, transportation, shelter and other social services. Using this holistic,
coordinated and preventive approach to care, the Camden Coalition was able to
reduce hospital visits by 40% and hospital bills by 56%.18 The Camden Coalition
demonstrated was that it was possible to transition super utilizers into an
environment where most of their care was provided by the primary care system and
a more robust social network, thus lowering the overall cost of their healthcare.
4. Other examples of successful data analysis and patient identification for
reduced health care expenditures in vulnerable populations
[To be completed.]
 Austin CommUnity Care, Travis County Texas; asthma project
 Alliance for Health in western Michigan;
Robert Wood Johnson Foundation (2011). “A Coalition Creates a Citywide Care Management
SystemIncreasing and improving access to primary and specialty care for Camden's most vulnerable
residents,” January 13. Accessed at: http://www.rwjf.org/en/research-publications/find-rwjfresearch/2011/01/a-coalition-creates-a-citywide-care-management-system-.html
16 Robert Wood Johnson Foundation (2012). “Better Care for Super-Utilizers: A profile of Jeffrey
Brenner, MD,” October 31. Accessed at: http://www.rwjf.org/en/about-rwjf/newsroom/newsroomcontent/2012/10/improving-management-of-health-care-superutilizers.html
17 Atul Gawande (2011), ibid.
18 Robert Wood Johnson Foundation (2012), ibid.
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Better Health of Great Cleveland
English T. Community health workers, Temple University Health System,
Philadelphia, PA
WellSpan Bridges to Health, York, PA
Alliance for Health in western Michigan;
Better Health of Great Cleveland
Crescent City Beacon Community in New Orleans;
The Greater Cincinnati Beacon Community; and
Southeast Michigan Beacon Communities in Detroit.
5. How do you get data-driven community care solutions?
The interventions by the Camden Coalition or Austin Community Care are driven by
an understanding of the vulnerable patient population derived from health records.
Obviously, the technological infrastructure that these community based care
organizations are now using does not in itself guarantee better health care
outcomes. The models of care provision matter enormously.
However, in this chapter the focus is on how to build the necessary information
infrastructures. Surprisingly, the electronic health records, databases, information
exchanges amongst hospital and providers are either still very new or in many
instances do not yet exist. Moreover, there are several impediments to their use,
some of which local organizations and governments might be able to help surmount.
What information and the technologies do the Camden Coalition and other
community groups need to identify high use, vulnerable patients?
First, there must be electronic health data for all relevant patients so that data can
be analyzed and individuals with complicated medical and social needs identified.
The reality is that while electronic health records have existed in some (usually
partial or fragmented) form for over thirty years, it was not until the last few years
that their use permeated the large majority of hospitals. Adoption of EHRs only
accelerated in 2009 with the passage of the federal HITECH Act which, for all intents
and purposes, mandated the use of electronic health records for any provider that
services the Medicare and Medicaid populations.19 Identifying super utilizer
patients across a city or region requires each health care provider to be able to
generate an electronic health records. If a patient uses multiple health care
providers, or goes to multiple hospitals, each of those institutions will likely have
separate EHRs for that person.
Secondly, the EHRs from separate providers must be sharable. It is important for
healthcare providers to be able to see all the relevant clinical information about
Health Information Technology for Economic and Clinical Health included funding from the 2009
American Recovery & Reinvestment Act (ARRA) and provided close to $20 billion incentive
payments for hospitals and physicians to use “certified” electronic health records and demonstrate
their “meaningful use.”
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their patient, regardless of where they were treated in the past. A comprehensive
view of patient information helps to avoid the unnecessary duplication of tests, to
improve diagnostic and prescription accuracy, and to facilitate care coordination.
There is a distinction to be made between the ability to transmit data across
organization and the ability to seamlessly incorporate data from different sources
into EHRs. In the US (and internationally) there are standards for diagnostic and
procedural codes, laboratory tests, and prescription medications which facilitates
the ability to understand the content of different EHRs. Unfortunately, the
interoperability standards for merging EHR content are not widely used. In other
words, it is currently unlikely that hospitals have the capacity to automatically
incorporate data generated by another EHR system. If all a patient’s care is within a
single healthcare system, the data within that EHR is easily be kept up to date. But
across healthcare systems, there are over 1000 different EHR products in use, which
makes the merging of data difficult and thus care coordination and management is
more complicated.20
Thirdly, organizations need consent or permission to transmit and use personally
identifiable health data. Health information exchanges must be set up across the
local health care providers to facilitate the flow of data between them. Health
information exchanges make it possible to share data about what patients they have
(i.e., a master patient index) and what sort of data they hold (i.e., adocument
locator/registry). HIEs establish the rules of exchange amongst health data holders
and with patients. Barring an HIE, data will remain siloed in separate health care
provider organizations for both privacy and commercial reasons.
Depending on the state, patients will either need to consent to participate in an HIE
or they might be assumed to consent unless they opt out of the HIE. A few HIEs
have the capacity to let patients decide what categories of health information they
are willing to share within the HIE; most have an all or none approach to data
exchange. There are several different models of health information exchanges and
much experimentation as many HIEs are still being developed (in part to meet the
data exchange requirements of the HITECH Act). Broadly speaking one can identify
three models:
(1) Centralized HIEs use a single Clinical Data Repository that is maintained
by an HIE authority. HIE members (e.g. hospitals) electronically transmit
agreed upon patient health information to the CDR, where it is securely
stored and continually updated.21
(2) Federated HIEs do not have a central data repository and do not
normalize or standardize the data which are remotely stored in each
Mark Braunstein (2013). Health Informatics in the Cloud. SpringerBriefs in Computer Science, p.
43.
21 From Corepoint Health. Accessed at: http://www.corepointhealth.com/geni/health-informationexchange-architecture-types
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separate organization’s EHR. The internet is used as the vehicle for
moving data. To retrieve patient data, a query is sent to the HIE’s patient
registry which then provides a “virtual roadmap” of where patient health
records are located.
(3) Private HIEs can be created by a hospital system. Essentially a centralized
model, it includes internal databases and referring physicians. Many ACO
structures are supported with private HIEs. 22
According to the Camden Coalition, their program uses data from the Camden
Health Information Exchange (HIE) which was created in 2010 (at the instigation of
the Camden Coalition) to collaboratively share data amongst healthcare providers in
the city. The original founders of the HIE were the three main hospitals but now
over 100 healthcare providers use the HIE. It is a web-based system that provides
real-time access to important (but limited) medical information about Camden
patients (including hospital data on admissions/discharges/transfers, lab results,
radiology results, medications, discharge summaries). 23 The Camden HIE also
makes it possible to share more detailed clinical data amongst healthcare providers
and institutions. If a health care record needs to be shared, that data can be securely
transmitted electronically from one provider to another. The Camden HIE also
includes an embedded Electronic Health Record, which allows health care providers
to record care management notes. “With patient consent, healthcare providers and
social workers across the city have access to these notes and can send encrypted
messages for care coordination purposes. ”24
One of the oldest HIEs is the Indiana HIE. It is a centralized HIE with a warehouse of
information on over 10 million patients. IHIE connects over 90 hosptials, long term
care facilities, rehabilitation centers, and community health clinics. It’s a private
entity supported by a foundation. Over 20,000 doctors subscribe its services (either
Docs4Docs or the Indiana Network for Patient Care) allowing them to look at
medical records which are supplied by multiple care givers.
Finally, someone – a community health organization, a regional provider coalition,
or a private vendor – needs to analyze the aggregated health information in order to
identify super utilizers and other categories of patients that might be targeted for an
intervention. Data from separate health care organizations have to be accurately
collated into a database and regularly updated.25 In Camden, this aggregation is
done within the HIE and can be exported “to identify additional care coordination
opportunities.”26
Corepoint Health, ibid.
the Camden Coalition website, at: http://www.camdenhealth.org/programs/healthinformation-exchange/
24 Camden Coalition for Health Partnership website. Accessed at:
http://www.camdenhealth.org/programs/care-management-program/
25 Alternatively, it is possible to create systems that query separate EHRs for data rather than
centrally collect it. This is the model for the FDA’s Sentinel system of adverse drug reactions.
26 Ibid.
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23From
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6. Policy Considerations
While it might seem obvious that hospitals and health care payers would see benefit
in identifying emergency room super utilizers and finding more efficient care
solutions to reduce their often inappropriate and costly hospital visits, the ability to
use data to target patients for such interventions is in fact fairly recent innovation.
As noted above, electronic health records have only become widespread since 2010.
In recent decades to that time, hospitals and insurance companies relied on medical
claims data for their analyses. Much of the data was (and still is) considered private,
proprietary and commercially sensitive. There was little appetite for sharing health
information amongst competitive hospitals in a region.
In fact, setting up the arrangement to share health data across different providers
continues to be a challenge for legal, financial and technical reasons. Legally, data
transmission in HIEs needs to be secure and private. Healthcare providers can be
fined for security breaches. The Health Information Privacy and Portability Act of
1996 mandates penalties including possible prison time for the disclosure to
unauthorized parties of identified health information. The sharing of personal
health information thus requires special safeguards to assure that only authorized
providers and business associates have access.
In addition, it is as yet unclear whether there are strong enough incentives for
groups to set up health information exchanges and whether they will be sustainable.
There are not many centralized HIEs that have succeeded in bringing together
different healthcare systems in a single network. The Camden Coalition and Austin
CommUnity Care are interesting examples of federated HIEs which, by serving the
vulnerable in a region, have succeeded in bringing together different hospitals
willing to share limited types of data in order to reduce their often uncompensated
expenses.
However, there are both federal and local incentives to create Health Information
Exchanges and to use the data shared therein to improve healthcare outcomes for
the population.
Some of the HITECH funds were set aside to develop model HIEs, called Beacon
Communities. Example Beacons… Rhode Island’s HIE uses direct (276,000 pateints
have consented, records screed by a consent gateway)…
The federal government has also developed its own, open source federated model of
information exchange. Complexity & cost is low, but its functional capability is
growing. Initial uses of Direct since its creation in 2010 as an alternative to fax
machine for lab results or referrals. Push data out the door of the doc. Many use
cases of Direct…. PCP referred to hospital, PCP refers to specialist, Specialist sends
findings to PCP, Visit summaries to patients, Immunization record to public health.
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Core requirements: Providers need email capability & internet access. Possible
entry into low cost HIE.
The approach to care pioneered by the Camden Coalition is not easy. Because much
of the care is coordinated and often outside typical health care provider institutions,
it is hard to get paid. There is a sense that with the creation of Medicare
Accountable Care Organizations, that some of the alternative models of care will be
cost effective alternatives to current the pay for performance care. Medical
institutions that register as Accountable Care Organizations are eligible for an extra
monthly payment to finance the coordination of care for their most chronically
expensive beneficiaries. “If total costs fall more than five per cent compared with
those of a matched set of control patients, the program allows institutions to keep
part of the savings. If costs fail to decline, the institutions have to return the monthly
payments.”27 New payment models may increase incentives for shared health data
use.
Communities can also dialogue with their local health care systems to help create
HIEs that serve the needs of the broader population. To better manage superutilizers hospitals and health care providers need to be willing to share data about
patients in order to identify who are the high cost repeat users and to target
interventions. Patient data and location data make possible the generation of heat
maps that identify where in a city super utilizers live. Based on such information,
interventions have included the assignment of health coaches or managers who visit
high-cost patients at home and help organize care that can keep them out of
hospitals; the establishment of dedicated primary health care clinics in the
neighborhoods with a high number of super utilizers; or building networks of
groups of coordinated care givers to better manage care over time.
Suggestions:
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27
Bringing providers/payors together to the table to discuss exchange
Financial incentives to reduce health care costs: ACA – capitation, pay for
performance
New Care models, Patient Centered Medical Homes, Focus on prevention, Pay
for Performance, Focus outcomes, Ability to coordinate care across care
across continuum, medicare ACOs
Financial incentives to adopt EHRs: ARRA Hitech Grants
Financial incentives to exchange data: Grants to States for HIEs -- 10 HIE
Challenge grants, Beacon Communities grants/SHARP, (many regions don’t
have functional HIE in their communities yet)
eHealth Exchanges -- NHIN, NwHIN are demonstration projects of HIE
Gawande, op. cit.
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Outline of Chapter on IT and Cities
1. What is the problem with high use users of ERs?
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Repeat users
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Repeat testing
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No prevention
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No follow up
4. Examples
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Austin ICCC
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Camden Coalition of Healthcare Providers, NJ, www.camdenhealth.org
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English T. Community health workers, Temple University Health System, Philadelphia, PA
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Kaiser Permanente
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Alliance for Health in western Michigan;
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Better Health of Great Cleveland
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Crescent City Beacon Community in New Orleans;
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The Greater Cincinnati Beacon Community; and
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Southeast Michigan Beacon Communities in Detroit.
2. What has been to try to reduce the use of EDs?
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Identify high use patients
Share data about high use patients
Outsource care to community organisations
Improve hospital & discharge and outpatient care
3. How do you get these types of solutions?
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Technology needs: EHRs, health data exchanges, HIEs, registries that aggregate patients into groups
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Agreement & capability to share of data amongst providers
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New Care models, Patient Centered Medical Homes, Focus on prevention, Pay for Performance, Focus outcomes,
Ability to coordinate care across care across continuum
5. What are the policies that are required of governments
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Bringing payors together, to the table
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ACA – capitation, pay for performance
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Grants to States for HIEs -- 10 HIE Challenge grants, Beacon Communities grants/SHARP, (many regions don’t have
functional HIE in their communities yet)
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eHealth Exchanges -- NHIN, NwHIN are demonstration projects of HIE
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www.dashboard.hit.gove
[6. Institutional needs]
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Where is the funding come from?
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The creation and sustainability of private HIEs
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Sustainability of HIEs in question
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