64 journal of law, medicine & ethics Dreams and Nightmares: Practical and Ethical Issues for Patients and Physicians Using Personal Health Records Matthew Wynia and Kyle Dunn Introduction and Definitions The term “Electronic Health Records” (EHR) means something different to each of the stakeholders in health care, but it always seems to carry a degree of emotional baggage. Increasingly, EHRs are advert- ized as a nearly unmitigated good that will transform medical care, improve safety and efficiency, allow better patient engagement, and open the door to an era of cheap, effective, timely, and patient-centered care.1 Indeed, for some EHR proponents the ben- efits of adopting them are so obvious that adoption has become an end in itself.2 But for others — and especially for a number of skeptical practitioners and patients — EHR is a code word that portends the cor- porate transformation of health care delivery, the loss of patient privacy, the demand that patients bear more responsibility in health care, and the unreflective take- over of the health care system by people who do not understand medical care or how health care relation- ships unfold.3 For our purposes, we will consider EHRs impar- tially, as a set of tools that can be used for a variety of purposes. We define EHRs broadly as any electronic means of storing and transferring health-related information. We exclude from this definition the use of the telephone and fax, arguably precursors to the electronic means of data exchange now available. Like face-to-face and paper-based interactions, the tele- phone and fax are generally limited to two people. Breaches of phone line security, while possible and perhaps even frequent, are unlikely to affect thou- sands of people at once. In this paper, we examine the development of a new set of EHR tools, Personal Health Records (PHRs). PHRs may be variously defined (Table I) and have sev- eral potential functional and payment models (Table II), but the general aim of all PHRs is to increase patients’ access to and sense of ownership over their health care information. According to the Markle Foundation, the advent of PHRs “represents a transi- tion from a patient record that is physician-centered to one that is patient-centered, prospective, interac- Matthew Wynia, M.D., M.P.H., is the Director of the In- stitute for Ethics at the American Medical Association and a Clinical Assistant Professor at the University of Chicago. He received his M.D. from the Oregon Health and Science Univer- sity in Portland, Oregon and his M.P.H. from Harvard Uni- versity School of Public Health in Boston, MA. Kyle Dunn, M.H.S., was a Research Assistant at the Institute for Ethics at the American Medical Association and is now a Ph.D. can- didate in the Department of Health Policy and Management at the Johns Hopkins Bloomberg School of Public Health. He received a B.S. in Molecular, Cellular and Developmental Bi- ology .

1. 64 journal of law, medicine & ethics
Dreams and
Nightmares:
Practical and
Ethical Issues
for Patients and
Physicians Using
Personal Health
Records
Matthew Wynia and Kyle Dunn
Introduction and Definitions
The term “Electronic Health Records” (EHR) means
something different to each of the stakeholders in
health care, but it always seems to carry a degree of
emotional baggage. Increasingly, EHRs are advert-
ized as a nearly unmitigated good that will transform
medical care, improve safety and efficiency, allow
better patient engagement, and open the door to an
era of cheap, effective, timely, and patient-centered
care.1 Indeed, for some EHR proponents the ben-
efits of adopting them are so obvious that adoption
has become an end in itself.2 But for others — and
especially for a number of skeptical practitioners and
patients — EHR is a code word that portends the cor-
porate transformation of health care delivery, the loss
of patient privacy, the demand that patients bear more
responsibility in health care, and the unreflective take-
over of the health care system by people who do not
understand medical care or how health care relation-
ships unfold.3

2. For our purposes, we will consider EHRs impar-
tially, as a set of tools that can be used for a variety of
purposes. We define EHRs broadly as any electronic
means of storing and transferring health-related
information. We exclude from this definition the use
of the telephone and fax, arguably precursors to the
electronic means of data exchange now available. Like
face-to-face and paper-based interactions, the tele-
phone and fax are generally limited to two people.
Breaches of phone line security, while possible and
perhaps even frequent, are unlikely to affect thou-
sands of people at once.
In this paper, we examine the development of a new
set of EHR tools, Personal Health Records (PHRs).
PHRs may be variously defined (Table I) and have sev-
eral potential functional and payment models (Table
II), but the general aim of all PHRs is to increase
patients’ access to and sense of ownership over their
health care information. According to the Markle
Foundation, the advent of PHRs “represents a transi-
tion from a patient record that is physician-centered
to one that is patient-centered, prospective, interac-
Matthew Wynia, M.D., M.P.H., is the Director of the In-
stitute for Ethics at the American Medical Association and a
Clinical Assistant Professor at the University of Chicago. He
received his M.D. from the Oregon Health and Science Univer-
sity in Portland, Oregon and his M.P.H. from Harvard Uni-
versity School of Public Health in Boston, MA. Kyle Dunn,
M.H.S., was a Research Assistant at the Institute for Ethics
at the American Medical Association and is now a Ph.D. can-
didate in the Department of Health Policy and Management
at the Johns Hopkins Bloomberg School of Public Health. He
received a B.S. in Molecular, Cellular and Developmental Bi-

3. ology from Yale College and an M.H.S. in Health Policy from
Johns Hopkins University.
tive, and complete.”4 It is the basic desire to increase
patient engagement that makes PHRs so alluring, so
promising, and so threatening at the same time.
We will explore some of the core functions of PHRs,
the degree to which different stakeholders believe that
PHRs will be useful in serving these functions, and
some practical barriers to adoption that PHR propo-
nents must face. Although many of these barriers have
been recognized for some time, and in certain cases
solutions have been proposed, adoption of PHRs by
patients and physicians remains achingly slow. This
fact raises the possibility that practical barriers might
not represent the only important roadblocks. Whereas
stumbling blocks can be technical, logistical, or finan-
cial,5 it is our hypothesis that these practical barriers
reflect underlying questions and concerns about a few
core ethical issues — most notably privacy, equity, effi-
ciency, integrity, and accountability — that must be
addressed squarely for PHRs to come into widespread
and effective use.
Interest in PHRs
Purchasers and Policy Makers
Although experts have questioned whether PHRs are
“the people’s choice”6 and whether consumers or cli-
nicians will be motivated to use them,7 two groups of
health care stakeholders are almost uniformly in favor
of PHRs: purchasers and policy makers.

4. Purchasers face the challenge of reigning in health
care costs while preserving or improving quality of
care to ensure optimal worker productivity. As the cost
of health insurance rises, many of the largest employ-
the effects of health information technology on the physician-
patient relationship • spring 2010 65
Wynia and Dunn
America’s Health Insurance
Plans (AHIP):
The industry-model personal health record is a private, secure,
Web-based tool main-
tained by an insurer that contains claims and administrative
information. PHRs may
also include information that is entered by consumers
themselves, as well as data from
other sources such as pharmacies, labs, and care providers.
PHRs enable individual
patients and their designated caregivers to view and manage
health information and
play a greater role in their own health care. PHRs are distinct
from electronic health
records, which providers use to store and manage detailed
clinical information. (2006)
American Health Information
Management Association
(AHIMA), American Medical
Informatics Association (AMIA):
The PHR is a tool for collecting, tracking and sharing
important, up-to-date informa-
tion about an individual’s health or the health of someone in

5. their care. (2007)
Healthcare Information and
Management Systems Society
(HIMSS):
An electronic Personal Health Record (ePHR) is a universally
accessible, layperson com-
prehensible, lifelong tool for managing relevant health
information, promoting health
maintenance and assisting with chronic disease management via
an interactive, common
data set of electronic health information and e-health tools. The
ePHR is owned, man-
aged, and shared by the individual or his or her legal proxy(s)
and must be secure to
protect the privacy and confidentiality of the health information
it contains. It is not a
legal record unless so defined and is subject to various legal
limitations. (2007)
U.S. Department of Health and
Human Services (HHS):
A personal health record is the collection of information about
an individual’s health
and health care, stored in electronic format. A personal health
record system refers to
the addition of computerized tools that help an individual
understand and manage the
information contained in the PHR. (2006)
Markle Foundation:
The PHR is an electronic application through which individuals
can access, manage and
share their health information, and that of others for whom they

6. are authorized, in a
private, secure and confidential environment. (2003)
National Alliance for Health
Information Technology
(NAHIT):
An electronic record of health-related information on an
individual that conforms to
nationally recognized interoperability standards and that can be
drawn from multiple
sources while being managed, shared and controlled by the
individual. (2008)
Table I
PHR Definitions
Sources: (1) AHIP.org, (2) AMIA.org, (3) HIMSS.org, (4)
NCVHS.HHS.org, (5) Connectingforhealth.org, (6) NAHIT.org
66 journal of law, medicine & ethics
S Y M P O S I U M
ers in the United States are becoming stakeholders in
PHR technologies. Wal-Mart, AT&T, BP America, and
Intel Corporation are members of the Dossia Founders
Group, a consortium of businesses that aims to provide
PHRs to their employees.8 At the moment, employee
participation in the Dossia initiative is voluntary, but
other purchasers are beginning to incentivize PHR use
through discounted products and services.9 Employ-
ers can match PHRs to health risk assessment results,
which then serve as a funnel into disease prevention

7. programs,10 hoping that investments in PHRs will be
returned in health care savings and improved work-
force productivity, though data to substantiate these
hopes are scarce. Some cite increases in employee
health awareness and participation in wellness pro-
grams as early measures of success.11
Policy makers generally share purchasers’ optimism
about PHRs. Even more so than for employers, per-
haps, the promise of PHRs for federal and state policy
makers is wrapped up in the promise of EHRs in gen-
eral: namely, the expectation that they can bring about
radical improvements in efficiency and quality of care.
A 2008 study by the Center for Information Technology
Leadership projects that the U.S. could save as much as
$21 billion a year if 80 percent of the population were
to use PHRs.12 President Barack Obama embraced this
hope with a “sweeping and optimistic” plan to promote
health IT,13 including almost $20 billion in various
provisions of the 2009 economic stimulus bill to sup-
port implementation of EHRs and targeting the year
2014 for completion of a nationwide electronic medical
record system14 (though David Blumenthal, National
Coordinator for Health Information Technology, has
suggested pushing this deadline back).15 A report by
the National Committee on Vital and Health Statis-
tics (NCVHS) credits PHR systems with more than 30
benefits, including the ability to strengthen disease pre-
vention, improve population health, and expand health
education opportunities.16 The Centers for Medicare
and Medicaid Services (CMS) has instituted a PHR
pilot project in South Carolina, where patients will have
the opportunity to operate PHRs populated by their
Medicare claims data, with more such experiments
planned.17 Predicting expanding use of PHRs, policy

8. makers have also suggested that PHR data could ben-
efit research in biomedical science and public health.18
It is possible, however, that purchasers, policy mak-
ers, and others are expecting too much from the com-
puterization of the health care system.19 Among policy
analysts, there are few EHR critics, but there are some
(1)
A provider-owned and provider-maintained digital summary of
clinically relevant health information
made available to patients. EHRs with internet portals and
relevant reports.
(2)
A patient-owned software program that lets individuals enter,
organize and retrieve their own health
information and that captures the patient’s concerns, problems,
symptoms, emergency contact infor-
mation, etc.
(3)
A portable, interoperable digital file in which selected,
clinically relevant health data can be managed,
secured and transferred. Platforms for portable PHRs include
smart cards, personal digital assistants,
cellular phones and USB-compatible (universal serial bus)
devices that can be plugged into almost
any computer.
(1) Consumer pays for the service directly.
(2) Advertising pays for the service.
(3) Employer or health plan pays for the service.

9. Payment Models (Gellman)2
Functional Models (Endsley)1
Sources: 1. S. Endsley, D.C. Kibbe, A. Linares, and K.
Colorafi, “An introduction to personal health records,” Family
Practice Management 13, no. 5 (2006): 57-62.
2. R. Gellman, “Personal Health Records: Why Many PHRs
Threaten Privacy,” The World Privacy Forum (2008), available
at <http://www.worldprivacyforum.org/pdf/
WPF_PHR_02_20_2008fs.pdf> (last visited February 19, 2009).
Table II
PHR Functional and Payment Models
the effects of health information technology on the physician-
patient relationship • spring 2010 67
Wynia and Dunn
skeptics. Carol Diamond and Clay Shirky, for example,
have written in Health Affairs that the thinking of
some purchasers and policy makers about the powers
of EHRs to transform health care borders on “magical
thinking” and that merely computerizing the existing
dysfunctional and inefficient system would not make
it better, it would “simply make it inefficient, faster.”20
They push adoption of EHRs not as a primary goal,
but only in the context of coordinated work to cre-
ate the policy environment needed to transform and
improve the way care is delivered.
With regard to PHRs, some policy experts have won-

10. dered whether PHRs will ever gain traction among con-
sumers.21 But the usual barriers noted revolve around
only privacy, patient interest, and awareness — since
many consumers have never heard of a PHR. Apart
from the privacy risks,22 very few, if any, policy experts
or purchasers have voiced concerns about any potential
adverse effects of PHRs. One commentator noted that,
unlike Quicken (a model for PHRs in the eyes of many,
since financial data are also complex and confidential),
“Tracking blood pressure may never be as much fun as
tracking an investment portolio.”23 But the basic idea
of patients having immediate access to their health
records is generally taken as an inherent good.
Assumptions about the Value of PHRs
In one sense, purchasers and policy makers are right
that promoting PHRs is a no-brainer. Patients have
the legal right to access their own medical records
and PHRs just make this happen more easily.24 What’s
more, PHRs also offer the opportunity for patients
to input new information into the record, which
should help in medical decision making. And better-
informed, more engaged patients are better served in
the health care system.25 But there are several ques-
tionable assumptions underlying these assertions.
Namely, that more information is always better than
less for decision makers, that patients should know
as much as possible about their own care, and that
patients ought to take more responsibility for health
care decisions.
The first assumption is an empirical question: are
decision makers always better off with more informa-
tion rather than less? While good information is clearly

11. necessary for good decisions, it is also possible to have
too much information, which leads to worse decisions
through a series of long-studied problems in the field
of cognition.26 With too much information, decisions
may be inappropriately delayed. Information overload
can occur and some information may be pushed out;
usually, more recently acquired information is retained
and used, even if it is not the most relevant. Informa-
tion will also tend to be retained if it supports a pre-
conceived notion. Mental fatigue or decision fatigue
can occur from the labor of sifting through informa-
tion, and fatigued decision makers might make fast,
careless decisions or suffer from decision paralysis.
In short, the human mind can only process a limited
amount of information. It is an open question whether
having all the blood pressure, glucose, cholesterol, and
weight readings for a patient, taken daily, would be
useful for medical decision making. In fact, the line
between empowering and overwhelming patients and
doctors with information is blurry, and depends on
many variables.
One potential solution to this problem is to have the
PHR assimilate large volumes of information, but then
feed it back to the user in a concise, summary format
or, better still, to aggregate and analyze the data and
provide a few specific recommendations for action.
In this regard, it seems the most promising PHRs for
improving health care decisions are those that offer
some form of explicit decision support and not merely
a place to store huge amounts of data.
The other two assumptions noted above — that
patients should know as much as possible about their
own care, and that patients ought to take more respon-

12. sibility for health care decisions — are normative
claims about patient responsibilities. They are claims
It is an open question whether having all the blood pressure,
glucose, cholesterol, and weight readings for a patient, taken
daily,
would be useful for medical decision making. In fact, the line
between
empowering and overwhelming patients and doctors with
information is
blurry, and depends on many variables.
68 journal of law, medicine & ethics
S Y M P O S I U M
about what patients ought to know and do. As such,
they have inherent ethical content. But before turning
to ethical concerns, let’s consider what we know about
patient and physician views on PHRs.
Patients and Physicians
Patient and physician views on PHRs are often posi-
tive, like those of purchasers and policy makers, but
more nuanced, demonstrating greater awareness that
PHRs might bear some actual risks. In a set of surveys
of patients and doctors that we and the Markle Foun-
dation conducted in 2008-2009, a large majority of
those patients who had ever used a PHR felt they were
valuable, but very few had used them and just under
half said they would be interested in trying to do so.27
Among physicians, half thought PHRs could empower

13. patients to participate in their care and 44% said they
would be willing to use PHRs in their clinical work,
but only 22% agreed that using PHRs would improve
their relations with patients (one-third disagreed),
and only 30% agreed PHRs would improve the qual-
ity of care.28 Meanwhile, large majorities worried that
PHRs might contain incorrect information, that pri-
vacy protections were not adequate, and that patients
might omit important information from their PHR.
These mixed views might simply reflect a wait-and-
see attitude towards PHRs, which are a technological
tool that few patients or doctors have any experience
using as yet. In May of 2006, 52% of consumer respon-
dents to one survey said they had never used a PHR
product because they had never heard of one.29 In
our more recent surveys, however, among physicians,
almost 20% refer to a patient’s PHR weekly or more
often, but 64% have never used one. Among patients,
fewer than 3% had an electronic PHR.
These mixed views and low adoption rates of PHRs
among patients and physicians might also reflect some
underlying fears of this type of tool and its potential
for unintended effects. But they should not be inter-
preted as reflecting an unwillingness of patients or
physicians to use technology. In fact, patients and
doctors often use technological tools to accomplish
specific, high-value tasks. A growing number of physi-
cians have experience with electronic records (in our
survey, 57% used some electronic records in their pri-
mary practice and 79% at the main hospital where they
admit patients), though very few use “only” electronic
records (18% and 16% in their practices and hospitals,
respectively). More than 75% of claims are now sub-
mitted electronically,30 and E-prescribing among phy-

14. sicians is increasing.31 Most patients like using email
to communicate with their doctor.32 So the question
is not whether physicians and patients will use tech-
nology; rather, it is the “value proposition” for using
PHRs, specifically.
The Varying Uses of PHRs
The NCVHS has drawn distinctions among different
PHRs according to certain attributes, such as their
contents, the source(s) of information they draw from,
who controls the data, and so on.33 These are impor-
tant differences, but it is also helpful to consider the
different proposed uses of the PHR. PHRs can poten-
tially be used for a variety of purposes, some of which
might have more appeal to certain audiences than
others.
Promoting Communication
When speaking to patients, proponents of PHRs tend
to emphasize how a PHR can facilitate communica-
tion, including for scheduling appointments, receiving
testing or treatment instructions, asking questions,
and renewing prescriptions. Improving such commu-
nication may be of greatest value to people with chronic
illness, or those caring for someone with a chronic ill-
ness, which might explain why these audiences are
most likely to report high interest in PHRs.34
Promoting Data Use
The data in PHRs can also be useful for tracking
diseases across populations, for quality control and
for marketing. These types of uses might be empha-
sized in discussions among developers and organiza-
tional purchasers, perhaps because these uses have a
stronger immediate business case. At the same time,

15. however, such uses of PHR data might raise con-
cerns among patients and physicians. Using the data
in PHRs for marketing or public health surveillance
might lead patients to worry about privacy, for exam-
ple, while physicians might balk at having PHR data
used for monitoring quality of care if PHRs are not
perceived as reliable or complete or if they were not
run by trustworthy institutions. In our survey, 68% of
physicians said they would not use any PHR that con-
tained advertisements, and commercial entities were
the least trusted source of PHRs (only 39% would
trust a PHR run by a commercial entity). Government
agencies were more trusted (56%), while professional
societies (80%) and medical groups (84%) had much
higher levels of trust to run PHRs.
Promoting Responsibility
A third major set of uses for PHRs is to increase patient
responsibility, empowering patients to serve as “stew-
ards” of their own health data and increasing patient
engagement in managing their own health care. PHRs
can deliver teaching materials, clinical prompts, and
the effects of health information technology on the physician-
patient relationship • spring 2010 69
Wynia and Dunn
other management tools to patients. Moreover, as one
set of commentators noted, “By placing the patients at
the center of health care data exchange and empow-
ering the patients to become the steward of their
own data, protecting patient confidentiality becomes
the personal responsibility of every participating

16. patient.”35
These three broad types of activities — promoting
communication, data use, and patient responsibility
— are related, but distinct sets of functions. There-
fore, in addition to considering the barriers to adopt-
ing PHRs for each of these uses, it is appropriate to
question whether a tool created for one purpose is
likely to be effective when used for a different purpose.
For example, where billing systems have been used
in efforts to monitor and improve the quality of care,
they have been notoriously unreliable for the latter
purpose.36 It is possible that competing PHR uses will
not be equally supported, or that accomplishing one
use will hinder accomplishing other important goals.
Clinicians such as Pamela Hartzband and Jerome
Groopman, for example, have noted that using some
EHRs improves documentation at the expense of “cre-
ative clinical thinking.”37
Equally important, if a PHR is promoted to one set
of users for one purpose (such as to facilitate commu-
nication) and to another set of users for other purposes
(to track disease management for reimbursement pur-
poses), then there is the risk of creating poor quality
information, gaming of the measurement system, and
mistrust among various PHR users. In fact, any time
a new tool is said to both improve quality and reduce
costs, there exists the possibility that some users will
believe the “real” motivation is cost-savings rather
than quality improvement, which might hinder trust,
cooperation, and adoption.
Barriers to Using PHRs among Patients
and Physicians
A series of issues have been frequently listed as the key

17. barriers to the use of PHRs by patients and physicians.
These include privacy and security concerns, costs,
and standards and interoperability. We will consider
privacy concerns below, under ethical concerns, but
first we turn briefly to costs and standards and how
they affect patients and physicians.
With regard to costs for patients, with so many tools
and so much information available online for free, it
seems likely that many patients will not pay anything
to create and manage a PHR. In fact, for someone who
interacts only rarely with the health care system, or
who might not relish the thought of contemplating ill-
ness any more often than necessary — even the small
time-cost entailed in creating and using an otherwise-
free PHR — might seem too much.
For patients, therefore, barriers of cost and interop-
erability are closely related. Because many will be
unwilling to devote a lot of time or money to creat-
ing a PHR, most experts believe that PHRs will need
to be self-populating with key data, such as lab tests,
prescriptions, core clinical information, allergies,
appointments, and so on. Such self-populating PHRs
will presumably become more common as relation-
ships between PHR companies and lab testing com-
panies, pharmacies, clinics, and other services are
worked out (perhaps through the “consumer access
services” envisioned by the Connecting for Health
Common Framework38). At the moment though, the
least-cost PHRs, from the patients’ standpoint, are
“tethered” products that are run by clinics, hospitals,
health plans, or employers. In these cases, the PHR
is, more or less, simply a patient-facing version of an
existing EHR. Patients may be able to add information

18. to this record, or to interact with it in various ways, but
they do not need to spend any time inputting data to
get some value from it. Of course, they are also teth-
ered to the system that created the PHR, and it might
be difficult to add information from other data sources
or to transfer the PHR data elsewhere.
With regard to costs for physicians, a similar analy-
sis applies. While a PHR product might be “free” for
the physician, the time required to examine it, add
information to it, and use it in medical decision mak-
ing is not. Additional costs would be associated with
PHR data that might be “incomplete, inaccurate, or
difficult to verify, resulting in liability concerns for
physicians.”39 As one physician put it, “The last thing I
want is for my office staff to have to deal with patients
arriving at the front desk with multiple, proprietary
PHRs in a host of different formats and containing all
sorts of unverifiable information.”40 For this reason,
an EHR with a patient portal comprising the PHR —
i.e., a tethered product — is appealing to physicians
as well. But in this case, the concern with the PHR
will be the same as potential concerns over the cost of
EHRs more generally. For some large practices, EHRs
have been associated with cost savings and revenue
increases, but for many small practices the cost of pur-
chasing and maintaining an EHR has been prohibitive
and unmatched by any significant offsetting increase
in revenues.41 According to several studies, the typical
acquisition cost for an electronic record system runs
upwards of $40,000, with annual operating costs of
$2-$16,000 per physician for smaller practices.42 Most
U.S. physicians practice in small groups and these cost
concerns have been a significant barrier to EHR, and
hence PHR, adoption.

19. 70 journal of law, medicine & ethics
S Y M P O S I U M
Even if upfront costs are addressed, there are pos-
sible ongoing costs of incorporating PHRs into the
workflow that also concern physicians. Many PHRs,
especially tethered ones, include some form of secure
messaging. Some physicians believe such PHRs can
dramatically improve patient-physician communi-
cation and that a “PHR that doesn’t connect to your
doctor is like an ATM without any money in it.”43
Being able to ask a question about a lab test result is
necessary to “close the loop” for PHRs that provide
patients with immediate access to their lab results.
For a few physicians, e-mail communication with
patients has become routine and is preferable to
using the telephone, but they are not the norm. One
has written, “Unlike most physicians who have heard
PHRs are coming, I am not afraid.”44 Many physicians
worry that opening a new channel for communica-
tion, unreimbursed, is just another unfunded man-
date. In our survey, almost two-thirds of physicians
were concerned about lack of reimbursement for time
spent reviewing PHRs. There is also the possibility
that an easily transportable PHR could prompt some
patients to switch physicians, since moving the record
is so simple. While this is a self-serving fear, it may
be real nonetheless. Similarly self-serving but real is
the fact that for physicians who receive no compen-
sation for time spent on electronic communications,
but who receive compensation for seeing patients in
the office setting, there is an obvious conflicting inter-

20. est that could hinder the use of PHRs to avert office
visits.
As with patients, cost and interoperability concerns
are related for physicians too. A PHR that can easily
assimilate information from multiple sources might
save time and money by providing a useful summary,
while a PHR that relies on the patient or others to
perform manual data entry is liable to be dismissed
by physicians as error-prone. At the same time, some
physicians might remain skeptical of any records
from a system outside their own, even if they seem
complete.45
Ethical Concerns
Finally, there are a series of key values that could be
threatened by PHRs. Recognizing the values conflicts
that PHRs can pose might be helpful in understand-
ing why patients and physicians have not yet taken
up PHRs with the same fervor as policy makers and
purchasers.
Privacy and Confidentiality
Far and away the most commonly recognized ethi-
cal barrier to using PHRs is the risk of confidential-
ity or security breaches, since not all parties interested
in PHRs have legal or ethical obligations to respect
patient privacy. Many PHR vendors do not believe
their technologies are subject to the HIPAA Privacy
Rule.46 Despite certain extensions of HIPAA by the
American Recovery and Reinvestment Act of 2009,
the legal status and privacy protections of PHRs are
not yet clear.47 Absent strong privacy protections,
patients and physicians might not be willing to con-
tribute information to PHRs. PHR designers must

21. therefore walk a careful, but little-regulated, line:
respecting the patient’s ethical right to control their
health information, while under pressure to use the
data in PHRs to gain other benefits. Perhaps the great-
est pressure will come from the desire to use PHRs for
marketing goods and services. While some marketing
messages might be desired, and patients might elect
to receive them at some point, given the fluid nature
of medical conditions and the instability of patients’
medical preferences over time, it is not clear that an
opt-in decision should hold indeterminately. In addi-
tion, the core principles of fair information practices,
as articulated by the Connecting for Health Common
Framework, are designed to address many urgent pri-
vacy concerns.48 In December 2008, the Department
of Health and Human Services proposed a nationwide
framework for privacy and EHRs,49 using the HIPAA
Privacy Rule as a baseline, though this has not been
without criticism.50
Many patients want complete control over what data shows up
in their PHR
and who gets to see it; yet if doctors believe a PHR is
incomplete or inaccurate,
and if they cannot share it with colleagues consulting on the
case, then they
will be less likely to use it and PHRs will not achieve the
benefits they should.
the effects of health information technology on the physician-
patient relationship • spring 2010 71
Wynia and Dunn

22. Equity
As with other advanced technical tools, there is reason
to be concerned that access to PHRs, with the ben-
efits they may bring, will not be distributed equitably.51
Those without computers, or who are less comfortable
using them, and those with lower levels of literacy,
lower levels of trust in medicine or medical technol-
ogy, and who do not speak or write in English, all may
be less able to take advantage of PHRs.
Once aware of this possibility, it can be addressed in
the design and implementation of PHRs. Populations
with especially poor health outcomes might derive
great benefit from these new tools, as they have the
furthest to improve. In our view, disadvantaged popu-
lations and the doctors who serve them should receive
targeted subsidies to ensure equal access to these new
tools. PHR-based educational materials should be
designed to meet the needs of low literacy and non-
English speaking populations. And special communi-
cation strategies should be used to promote the use of
these tools among diverse cultural groups.
Efficiency
Whether PHRs are considered efficient depends
entirely on the use being pursued. If widely adopted,
PHRs might be an efficient way to improve population
monitoring, marketing, or tracking the quality of care.
But when patients and physicians think about efficient
health care, they generally mean improving individu-
als’ health outcomes at reasonable cost. Despite tre-
mendous investments in developing and promoting
PHRs, research has not yet proven they yield health
benefits to these end users. Given that patients and
doctors have limited resources to devote to improv-

23. ing health outcomes, it is not obvious that PHRs are
the most efficient investment each party could make
at this time. For doctors, perhaps resources should go
towards hiring more staff or purchasing new equip-
ment. For patients, maybe the time spent establishing
and maintaining a PHR would be better spent exercis-
ing or cooking healthy meals.
There are two complimentary ways to address this
concern: collect data to prove the health benefits of
using PHRs or reduce the cost of using them. When
discussing costs, however, recall that direct expendi-
tures on the PHR product are not the only costs that
matter for patients and physicians (see our earlier dis-
cussion under “barriers” above). To the extent PHR
functionality can be integrated into existing EHRs,
PHRs will be more efficient for patients and physi-
cians (incidentally, integrated PHRs may also have
greater privacy protection, since they are generally
covered by HIPAA).
Integrity
In one sense, patients’ privacy and security concerns
reflect worries about PHR “integrity.” But when physi-
cians voice concerns about the reliability of the data
held in PHRs, they are also raising questions about
the integrity of these products. In this regard, there is
a difficult balancing act around these two definitions
of integrity, which must be faced by PHR developers.
Many patients want complete control over what data
shows up in their PHR and who gets to see it; yet if
doctors believe a PHR is incomplete or inaccurate,
and if they cannot share it with colleagues consulting
on the case, then they will be less likely to use it and
PHRs will not achieve the benefits they should.

24. These concerns should be mitigated by several facts.
First, the patient’s PHR is not a substitute for the legal
medical record held by the physician. Second, patients
have always controlled how much they disclose. It is a
fantasy to believe that patients are always completely
open and honest with their doctor; but nevertheless,
many doctors and patients cling to this fantasy with
devotion. Third, it is also a fantasy to believe that phy-
sicians’ records are always complete and accurate;
neither party is the sole “source of truth” and patients
might pick up errors in their data, if they have access
to them.52
Despite these mitigating factors, it is not easy to
split the difference between the patients’ desire for
control and the doctors’ desire for accurate and com-
plete information. In our view, we should lean towards
patient control and then help patients to understand
the potential risks of withholding information. A com-
plimentary possibility is to offer an option that would
mark the physician’s view of PHRs where data have
been deleted by the patient. There might be no indica-
tion as to what information was removed, but it could
signify to the doctor that further discussion with the
patient might be warranted. If mistrust or embar-
rassment is an issue, it might be better to discuss this
explicitly.
Accountability
Finally, and perhaps most importantly, both patients
and physicians are concerned about being held
accountable for the contents of the PHR. Physicians
wonder if they will be held liable for knowing all that
is in a patient’s PHR. Will merely opening a patient’s
PHR, which could be voluminous, expose a physi-
cian to liability risk if she misses something contained

25. therein? If so, will this deter physicians from opening
the PHR in the first place?
More challenging is coming to grips with patient
concerns about accountability, which are rarely raised
explicitly but manifest more often as an appearance of
72 journal of law, medicine & ethics
S Y M P O S I U M
patient apathy towards PHRs. One of the explicit goals
of the PHR movement is to encourage greater patient
engagement in their own care. Patients who track
their own health care data, communicate more often
with health care professionals, and receive prompts to
pursue healthy behaviors seem more likely to be good
health care consumers who adopt healthy lifestyles.
But while increased patient engagement is widely seen
as desirable, one wonders whether many patients will
welcome the call for them to take on more responsibil-
ity. Some might not be capable of assuming heightened
responsibility, others might not want to. There is some
evidence that a substantial minority of patients does not
want shared decision making.53 As the humorist Dave
Barry once wrote, “I don’t WANT to be an informed
medical consumer. I liked it better when my only medi-
cal responsibility was to stick out my tongue.”54 Recent
surveys suggest that many patients might agree with
this general sentiment.55 It should not be surprising
that some people try to think as little as possible about
illness and infirmity and dislike the notion of being a
health care “consumer,” rather than a patient. On the
other hand, engaged patients receive higher quality

26. care, are more likely to participate in activities linked
with better health such as preventive care and screen-
ing, and they may have better health outcomes and
lower costs.56 What’s more, specific interventions can
raise patient activation levels.57 So the ethical question
is: To what degree is it appropriate to accept a per-
son’s choice to be relatively disengaged with regard to
their own health care? Or, alternatively, to what extent
should less engaged individuals be punished for their
ignorance, unhealthy lifestyle choices, or lack of adher-
ence to prescribed therapy?
There is no simple solution to this dilemma, which
balances the values of autonomy and personal respon-
sibility against the virtues of beneficence and forgive-
ness. However, if there are ways to make it easier for
individuals to make healthy lifestyle choices, we should
pursue them. Merely removing barriers to using tools
that support engagement, such as PHRs, should fos-
ter increased patient activation on a voluntary basis. If
additional resources can be spared, incentives should
promote activation. Carrots to encourage healthy
behaviors will always be easier to defend than sticks to
punish the unhealthy.
References
1. D. Roberts, “Paper Kills’” Should be Health Care’s Mantra,”
Patient Safety & Quality Health Care, May/June 2006, at 56-7,
available at <http://www.himss.org/content/files/20060614_
PaperKills_Roberts.pdf> (last visited February 14, 2010).
2. C. C. Diamond and C. Shirky, “Health Information Technol-
ogy: A Few Years of Magical Thinking?” Health Affairs, Web
Exclusive, April 19, 2008.

27. 3. L. B. Harmon, ed., Ethical Challenges in the Management
of Health Information (Boston: Jones and Bartlett Publish-
ers, 2006): 139-170; P. Hartzband and J. Groopman, “Off the
Record: Avoiding the Pitfalls of Going Electronic,” New Eng-
land Journal of Medicine 358, no. 16 (2008): 1656-1658; S.
Silverstein, “Healthcare IT Backwater: The $20 Billion Abyss?
Case One,” Health Care Renewal Blog, February 7, 2009, avail-
able at <http://hcrenewal.blogspot.com/2009/02/hospital-it-
backwater-20-billion-abyss.html> (last visited December 16,
2009).
4. Markle Foundation, “Connecting Americans to Their Health-
Care: Final Report,” Working Group on Policies for Electronic
Information Sharing between Doctors and Patients, July 2004,
at 14, available at <www.connectingforhealth.org/resources/
wg_eis_final_report_0704.pdf> (last visited December 16,
2009).
5. D. Blumenthal, “The Federal Role in Promoting Health
Infor-
mation Technology,” The Commonwealth Fund, Perspectives
in Health Reform, January 2009, available at <http://www.
commonwealthfund.org/Content/Publications/Perspectives-
on-Health-Reform-Briefs/2009/Jan/The-Federal-Role-in-
Promoting-Health-Information-Technology.aspx> (last visited
December 16, 2009).
6. L. Sprague, Personal Health Records: The People’s Choice?
National Health Policy Forum, Issue Brief 820, November
30, 2006, available at <http://www.nhpf.org/library/issue-
briefs/IB820_PHRs_11-30-06.pdf> (last visited December 16,
2009).
7. K. Heubusch, “PHRs for the Masses? Consumers Say They
Are
Interested in PHRs, but Will They Use Them?” Journal of the

28. American Health Information Management Association 78,
no. 4 (2007): 34-36.
8. M. Lewis, Jr., “Planning for a PHR World,” Medical
Economics
85, no. 17 (2008): 20-22.
9. J. Norris, Dossia and Doctors: An Employer-Driven Personal
Health Record and the Provider, John-Norris website, August
29, 2007, available at <http://john-norris.net/wp-content/
uploads/2007/09/dossia_norris.pdf> (last visited December
16, 2009).
10. M. Barrett, “The Employer Perspective,” in C. J. Gearon,
ed.,
Perspectives on the Future of Personal Health Records (Oak-
land: California HealthCare, 2007): 19-22.
11. R. Steinbrook, “Personally Controlled Online Health Data:
The Next Big Thing in Medical Care?” New England Journal
of Medicine 358, no. 16 (2008): 1653-1656.
12. S. Barlow, J. Johnson, and J. Steck, “The Economic Effect
of
Implementing an Electronic Medical Record in an Outpatient
Clinical Setting,” Journal of Healthcare Information Manage-
ment 18, no. 1 (2004): 46-51.
13. D. McCullagh, “Q&A: Electronic Health Records and You,”
CNET Tech News, May 19, 2009, available at <http://
www.cbsnews.com/stories/2009/05/19/tech/cnettechnews/
main5025516.shtml> (last visited December 16, 2009).
14. D. Peddicord, The American Recovery and Reinvestment
Act
of 2009 (HR 1), Press Release, American Medical Informat-

29. ics Association, February 16, 2009, available at <http://www.
amia.org/files/shared/The_American_Recovery_and_Rein-
vestment_Act.pdf> (last visited December 16, 2009).
15. McKnight’s Long-term Care News, “Electronic Health
Records
Timeline in Stimulus Bill Could Be Unrealistic, Senior Health
IT Official Says,” May 19, 2009, available at <http://www.
mcknights.com/Electronic-health-records-timeline-in-stim-
ulus-bill-could-be-unrealistic-senior-health-IT-official-says/
article/137034/> (last visited December 16, 2009).
16. National Committee on Vital and Health Statistics, U.S.
Department of Health and Human Services, Personal Health
Records and Personal Health Record Systems, February 2006,
available at <http://www.ncvhs.hhs.gov/0602nhiirpt.pdf>
(last visited December 16, 2009) [hereinafter NCVHS].
17. Centers for Medicare and Medicaid, U.S. Department of
Health and Human Services, “Personal Health Records: Over-
view,” September 25, 2008, available at <http://www.cms.
the effects of health information technology on the physician-
patient relationship • spring 2010 73
Wynia and Dunn
hhs.gov/perhealthrecords/> (last visited December 16, 2009);
“Vendor Solicitation,” Noridian Administration Services, LLC,
2008, available at <https://www.noridianmedicare.com/phr/
forvendors.htm> (last visited March 2, 2009).
18. F. T. Bourgeois, W. W. Simons, K. Olson, J. S. Brownstein,
and

30. K. D. Mandl, “Evaluation of Influenza Prevention in the Work-
place Using a Personally Controlled Health Record: Random-
ized Controlled Trial,” Journal of Medical Internet Research 10,
no. 1 (2008): e5, available at <http://www.jmir.org/2008/1/
e5/> (last visited December 16, 2009); R. Kukafka, J. S.
Ancker,
C. Chan, J. Chelico, J. Khan, and S. Mortoti et al.,
“Redesigning
Electronic Health Record Systems to Support Public Health,”
Journal of Biomedical Informatics 40, no. 4 (2007): 398-409.
19. See Steinbrook, supra note 11.
20. See Diamond and Shirky, supra note 2.
21. See Sprague, supra note 6; Heubusch, supra note 7; and
Stein-
brook, supra note 11.
22. R. Gellman, Personal Health Records: Why Many PHRs
Threaten Privacy, World Privacy Forum, Legal and Policy
Analysis, February 20, 2008, available at <http://www.world-
privacyforum.org/pdf/WPF_PHR_02_20_2008fs.pdf> (last
visited December 17, 2009).
23. See Barrett, supra note 10.
24. V. Kuraitis and D. Kibbe, “Leavitt’s Framework Shoehorns
the
HIPAA Privacy Rule onto Your Own Personal Health Informa-
tion,” e-CareManagement Blog, December 17, 2008, available
at <http://e-caremanagement.com/leavitts-framework-shoe-
horns-the-hipaa-privacy-rule-onto-your-personal-health-
information/> (last visited December 17, 2009).
25. J. H. Hibbard and P. J. Cunningham, “How Engaged Are
Con-

31. sumers in Their Health and Health Care, and Why Does It
Matter?” Center for Studying Health System Change, Research
Brief No. 8, October 2008, available at <http://www.hschange.
com/CONTENT/1019/> (last visited December 17, 2009).
26. D. Bell, H. Raiffa, and A. Tversky, eds., Decision Making:
Descriptive, Normative and Prescriptive Interactions (Cam-
bridge: Cambridge University Press, 1988): at 1-32; R. Har-
ris, “Introduction to Decision Making,” Virtual Salt website,
available at <http://www.virtualsalt.com/crebook5.htm> (last
visited February 28, 2009).
27. Markle Foundation, Americans Overwhelmingly Believe
Elec-
tronic Health Records Could Improve Their Health: Nearly 9 in
10 Say Privacy Practices Are a Factor in Their Decision to Sign
Up for One, Connecting for Health News Release, June 2008,
available at <http://www.connectingforhealth.org/resources/
ResearchBrief-200806.pdf> (last visited December 17, 2009).
28. M. K. Wynia, “Physicians’ Views on Using Personal Health
Records: Results of a National Physician Survey,” Health
Information and Management Systems Society Annual Meet-
ing, March 3, 2010, Atlanta, GA (presentation slides available
from author).
29. See Sprague, supra note 6.
30. J. McCormack, “Picking the Right Process: Deciding the
Best
Way to Submit Claims,” AMNews, February 18, 2008, avail-
able at <http://www.ama-assn.org/amednews/2008/02/18/
bisa0218.htm> (last visited December 17, 2009).
31. The Informed Patient, “Incentives Push More Doctors to
E-Prescribe,” Wall Street Journal, January 21, 2009, available

32. at <http://online.wsj.com/article/SB123249533946000191.
html> (last visited December 17, 2009).
32. L. Baker, T. H. Wagner, S. Singer, and M. K. Bundorf,
“Use of
the Internet and E-mail for Health Care Information: Results
of a National Survey,” JAMA 289, no. 18 (2003): 2400-2406.
33. See NCVHS, supra note 16.
34. See Markle Foundation, supra note 4, at 51.
35. J. D. Halamka, K. D. Mandl, and P. C. Tang, “Early
Experiences
with Personal Health Records,” Journal of the American Medi-
cal Informatics Association 15, no. 1 (2008): 1-7.
36. P. C. Tang, M. Ralson, M. F. Arrigotti, L. Qureshi, and J.
Gra-
ham, “Comparison of Methodologies for Calculating Quality
Measures Based on Administrative Data Versus Clinical Data
from an Electronic Health Record System: Implications for
Performance Measures,” Journal of the American Medical
Informatics Association 14, no. 1 (2007): 10-15.
37. See Hartzband and Groopman, supra note 3.
38. Markle Foundation, “Common Framework for Networked
Per-
sonal Health Information,” Connecting for Health, available
at <http://www.connectingforhealth.org/phti/docs/Overview.
pdf> (last visited December 17, 2009).
39. See Steinbrook, supra note 11.
40. D. Kibbe, “The Clinical Technology Perspective,” in
Gearon,

33. ed., supra note 10, at 16-19.
41. See Barlow, Johnson, and Steck, supra note 12; C. DesRo-
ches, E. G. Campbell, and S. R. Rao et al., “Electronic Health
Records in Ambulator Care: A National Survey of Physicians,”
New England Journal of Medicine 359, no. 1 (2008): 50-60.
42. H. Rippen, “Summary of the Findings Assessing the
Econom-
ics of EMR Adoption and Successful Implementation in Phy-
sician Small Office Settings,” Presentation, Office of the Assis-
tant Secretary for Planning and Evaluation, U.S. Department
of Health and Human Services, available at <mhcc.maryland.
gov/electronichealth/ehr/ASPE-EMRAdopt.ppt> (last visited
February 14, 2010).
43. K. Terry, “PHR Reality Check: Will PHRs Rule the Waves
or Roll
Out with the Tide?” HHN Magazine, September 2008, available
at <http://www.hhnmag.com/hhnmag_app/jsp/articledisplay.
jsp?dcrpath=HHNMAG/Article/data/08AUG2008/0808HHN_
FEA_MedRecords&domain=HHNMAG> (last visited December
17, 2009).
44. D. Z. Sands, “The Physician Perspective,” in Gearon, ed.,
supra
note 10, at 13-16.
45. See Terry, supra note 43.
46. N. Versel, “HIPAA Expands to Personal Health Records –
Just
Not Google’s or Microsoft’s, If You Ask Them,” BNET Health-
care, April 7, 2009, available at <http://industry.bnet.com/
healthcare/1000480/is-google-above-the-law/> (last visited

34. December 17, 2009).
47. See Gellman, supra note 22.
48. See Markle Foundation, supra note 38.
49. “Nationwide Privacy and Security Framework for
Electronic
Exchange of Individually Identifiable Health Information,”
Office of the Coordinator of Health Information Technology,
U.S. Department of Health and Human Services, December
2008, available at <http://healthit.hhs.gov/portal/server.
pt/gateway/P TARGS_0_10731_848088_0_0_18/Nation-
widePS_Framework-5.pdf> (last visited December 17, 2009).
50. See Kuraitis and Kibbe, supra note 24.
51. D. Detmer, M. Bloomrosen, B. Raymond, and P. Tang,
“Inte-
grated Personal Health Records: Transformative Tools for
Consumer-Centric Care,” BMC Medical Informatics and Deci-
sion Making 8 (2008): 45, available at <http://www.biomed-
central.com/1472-6947/8/45> (last visited March 1, 2009).
52. See Markle Foundation, supra note 38.
53. W. Levinson, A. Kao, A. Kuby, and R. A. Thisted, “Not All
Patients Want to Participate in Decision Making: A National
Study of Public Preferences,” Journal of General Internal Med-
icine 20, no. 6 (2005): 531-535.
54. D. Barry, “Good for Whatever Ails You,” June 21, 1998,
reprinted at <http://www.freewebs.com/stopped_our_statins/
funnystuff.htm> (last visited December 17, 2009).
55. See Hibbard and Cunningham, supra note 25.
56. Id.; D. M. Mosen, J. Schmittdiel, J. Hibbard, D. Sobel, C.

35. Remmers, and J. Bellows, “Is Patient Activation Associated
with Outcomes of Care for Adults with Chronic Conditions?”
Journal of Ambulatory Care Management 30, no. 1 (2007):
21-29; S. L. Norris, J. Lau, S. J. Smith, C. H. Schmid, and M.
Engelgau, “Self-Management Education for Adults with Type 2
Diabetes: A Meta-Analysis of the Effect on Glycemic Control,”
Diabetes Care 25, no. 7 (2002): 1159-1171.
57. J. H. Hibbard, E. R. Mahoney, R. Stock, and M. Tusler,
“Do
Increases in Patient Activation Result in Improved Self-
Manage-
ment Behaviors?” Health Services Research 42, no. 4 (2007):
1443-
1463.
Copyright of Journal of Law, Medicine & Ethics is the property
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articles for individual use.
Use of Electronic Technologies to Promote Community and
Personal
Health for Individuals Unconnected to Health Care Systems
Ensuring health care ser-

36. vices for populations outside
the mainstream health care
system is challenging for all
providers. But developing
the health care infrastructure
to better serve such uncon-
nected individuals is critical
to their health care status, to
third-party payers, to overall
cost savings in public health,
and to reducing health dis-
parities.
Our increasingly sophisti-
cated electronic technolo-
gies offer promising ways to
more effectively engage this
difficult to reach group and
increase its access to health

37. care resources. This process
requires developing not only
newer technologies but also
collaboration between com-
munity leaders and health
care providers to bring un-
connected individuals into
formal health care systems.
We present three strate-
gies to reach vulnerable
groups, outline benefits and
challenges, and provide
examples of successful
programs. (Am J Public
Health. 2011;101:1163–1167.
d o i : 1 0. 21 0 5/ A J P H . 2 0 10 .
30 0 00 3 )
John F. Crilly, PhD, MPH, MSW, Robert H. Keefe, ACSW,

38. PhD, and Fred Volpe, MPA
DURING THE PAST DECADE,
the United States has experien-
ced a rapid growth of electronic
health information technology in
hospital and health care provider
systems to enhance access and
quality for service recipients. State
health departments have devel-
oped health information ex-
changes across large health care
networks, insurance providers,
and independent physician prac-
tices, and the use of electronic
health records has greatly accel-
erated.1 These initiatives evince
progress toward achieving a fully
connected national health care
system by 2014.2
Nevertheless, cities and
counties struggle to understand
the health care needs of individ-
uals who do not or cannot easily
access formal health care net-
works but use expensive services
for emergency and routine care.
Health information technology is
currently designed to benefit pri-
marily populations already con-
nected to such systems. As systems
increase their use of health data to
influence treatment and policy,
developing strategies to include

39. individuals who are largely out-
side health care networks is criti-
cal.
The US health care system has
been criticized for low-quality care
that produces multiple medical
errors3,4 and high-cost services
that limit access to care,5 perpetu-
ating health disparities. Primary
care focused on preventing illness
and death is associated with more
equitable distribution of health
and better outcomes than is spe-
cialty care6---8; countries directing
resources to primary care and
enhancing population health have
lower costs and superior out-
comes.9 Although the United
States has the world’s most ex-
pensive health care system, other
countries regularly surpass the
United States on most health in-
dicators, including quality, access,
efficiency, equity, and healthy
lives.10 Capturing data on individ-
uals unconnected to health care
systems can improve health care
access and outcomes while reduc-
ing costs––important public health
goals.
The federal government allows
states and local communities to
develop their own health care in-

40. frastructures. By making changes
at the local level, communities can
become more effective in using
existing services to capture health
care data for hard to reach pop-
ulations. We have examined sev-
eral strategies for using existing
electronic technologies to better
connect such individuals to some
aspect of their local health care
system.
THE PROBLEM OF HEALTH
CARE ACCESS AND
POSSIBLE RESPONSES
Converging social problems
(e.g., geographic isolation, limited
education, poor health, poverty,
and the marginalization of vul-
nerable groups including people of
color and the rural poor) inhibit
certain individuals’ access to
health care services.5 People who
have the poorest health tend to
receive the least health care, and
those with limited health options
because of inadequate insurance
or unavailable providers often use
high-cost services, such as urgent
care and emergency rooms, which
may not be appropriate to their
needs. This problem is significant:
nearly 75 million adults––42% of
the population younger than 65

41. years––had either no or inade-
quate insurance in 2007.11 Lack of
consistent, documented contact
impedes the accumulation of
meaningful health data for health
care planning and intervention
development. Uninsured or un-
derinsured groups are at risk for
remaining isolated despite health
care reform.
Although few health care ser-
vice data may be collected from
these groups, there are other ways
to track service use. Data from
contacts with other community-
based, nonhealth services can be
employed to target specific com-
munity health needs. For example,
some groups without regular
health care may have contact with
departments of social services,
criminal justice, specialty courts
(e.g., drug, mental health, veterans,
and family), or schools. Data
extracted from these systems, us-
ing secure data transfer protocols
already developed by health in-
formation exchanges, could help
address and evaluate the health
and service needs of these groups.
These data can then be used to
develop and strategically imple-
ment novel health-promotion and
grassroots interventions.

42. Similar approaches have been
applied to track or monitor clinical
intervention outcomes,12,13 clinical
trials,14 adherence to specific
COMMENTARY
July 2011, Vol 101, No. 7 | American Journal of Public Health
Crilly et al. | Peer Reviewed | Commentary | 1163
interventions,15,16 and infections.17
Broader cross-systems data-use
collaborations between commu-
nity and health care providers to
increase care among uncon-
nected groups have also been
successful.18---21 Clinical trials of
cross-program multidisciplinary
interventions have reduced such
health-related stressors as high
blood pressure and cardiac
problems among poor families,22,23
disseminated HIV prevention
programs in African American
communities,24 delivered inner-
city tuberculosis prevention
efforts,25 and decreased negative
birth outcomes among low-
income African Americans.26
Initiatives derived from these
concepts are already under way in

43. some communities. The Partnership
for Results in Auburn, New York
(http://www.partnershipforresults.
org), developed a cross-systems data
access and sharing collaboration
around children at risk for school
violence. San Francisco Children’s
System of Care (http://nccc.
georgetown.edu/documents/
ppsanfran.pdf) developed and
expanded their collaboration to
collect individual-level data on
youth across a series of systems,
including schools and probation,
to target and evaluate novel in-
terventions.
Access to health-related infor-
mation and health promotion has
expanded with the growth of the
Internet,27,28 particularly in the
mental health field, which is rap-
idly developing online versions of
actual treatment.29 No-cost per-
sonal health records are available
online, allowing individuals to
bank and control their own health
data. Broadband Internet access
and mobile wireless are available
in all urban and most nonurban
areas, offering new opportunities
to reach individuals outside health
care networks.
TECHNOLOGY TO REDUCE
BARRIERS TO HEALTH

44. CARE
Developing cohesive, commu-
nity-based strategies for using
health information technology and
electronic communication tech-
nologies optimally is critical to
dismantle barriers to health care
and health information.4 To help
communities reduce such impedi-
ments, we propose several strate-
gies.
Communities: Collaborations
for Health-Focused Use of
Community-Based Data
Individual-level data exist in
public and private agencies and
institutions (e.g., social services,
criminal justice, colleges, and trade
schools). These data are confiden-
tial and protected and typically
include personal identifiers and
service use history. Because of
their size and scope, these systems
have a similar database infra-
structure and often contain data
on the same individual. Collective
data from these systems could
help drive new forms of commu-
nity-wide health promotion and
service delivery. To build such
systems, three tasks are essential.

45. Task 1: Engaging the community.
It is essential to understand a
community’s political geography
and to identify entities that will
form the infrastructure to facilitate
and coordinate the use of data
from extant systems for that com-
munity to use. Choosing key
leaders from potential participat-
ing agencies that will form the
collaborative should be according
to their willingness, influence, and
ability to collaborate and properly
use centralized data. The collabo-
rative can then team with broader
health-focused organizations, such
as local health departments in
urban areas and offices of rural
health in state health departments,
to build the initial support base
and vision.
Task 2: Developing a plan. Once
formed, members of a collabora-
tive must develop an action plan.
A critical component is an assess-
ment of the content of all partici-
pating data systems. The plan may
involve building a comprehensive
data dictionary of potential data
fields applicable to health-related
risk. A feasible system must be
relatively simple, low cost, risk
controlled, time efficient, and

46. beneficial for participating
agencies. A key collaborator in this
task is a regional health informa-
tion exchange, which can assist in
providing a secure information
exchange environment. Particu-
larly important are the consent
and data security processes30 and
the development of effective data
use agreements that limit liability
regarding the unintended use of
data.31
Task 3: Forming a collaborative.
Building a collaborative to drive
this process and use the data re-
quires input from various experts,
including researchers, program
developers, and trainers, who can
introduce fresh ideas regarding
program development, care deliv-
ery, and outcomes tracking and
measurement. Indicators of the
success of the initiatives may in-
clude fewer missed days of work
or school, decreased emergency
room visits, and better communi-
cation among multiple health care
systems. Ideally, the collabora-
tive’s leadership should be based
at local public health departments
because of their community-wide
scope.
Veterans returning from over-
seas could serve as a test case for

47. how such a system might work.
Despite available care, many vet-
erans do not connect with the
Veterans Affairs health care
system and struggle for long pe-
riods with adjustment problems
affecting their physical and mental
health. Identifying points of entry
into community systems such as
schools or social services may help
these systems better meet the
needs of veterans with high-risk
burdens but only minimal in-
volvement with health or mental
health services. The Veterans Af-
fairs health care system has al-
ready obtained much information
that may be used to improve
returning veterans’ quality of
care.32,33
Health Care Systems:
Reaching Out Through
Electronic Means
Although the Internet can serve
as a conduit for reaching geo-
graphically and socially isolated
individuals, understanding its cur-
rent usability and limits is neces-
sary for effective planning. Inter-
net access occurs through (faster)
broadband or (slower) dial-up

48. depending on geography.34 Some
areas have no access at all; some
households choose not to use the
Internet (Table 1).
The Internet is the primary way
most users (67%) obtain health
care information,36 but only 63%
of US households have an Internet
connection. Urban areas have
greater broadband access than do
nonurban areas, which typically
have more dial-up connections.
Whites use computers to connect
to the Internet more often than do
African Americans (59% and
45%, respectively), but more Af-
rican Americans (48%) use mobile
wireless devices than does the
general population (32%).28
Wireless handheld devices are
better options for contact in rural
areas because signal delivery is
more flexible, although gaps per-
sist as the result of terrain or
geography. Consequently, reaching
COMMENTARY
1164 | Commentary | Peer Reviewed | Crilly et al. American
Journal of Public Health | July 2011, Vol 101, No. 7
individuals electronically may re-

49. quire a multifaceted approach.
Health-related Web sites pro-
vide information on specific med-
ical diagnoses (e.g., diabetes), gen-
eral medical guidance (e.g., http://
www.WebMD.com), access to
medical literature (e.g., http://
www.PubMed.com), and treat-
ment options for mental health
conditions.29 Sites such as http://
www.patientslikeme.com allow
individuals to report their symp-
toms and evaluations of medica-
tions or treatments.37 Message
dissemination technology can now
rapidly access targeted groups in
communities for specific safety or
health purposes.38 Twitter tech-
nology is increasingly used in pri-
vate industry39 and is gaining ac-
ceptance in medical settings.40
Effective use of these technolo-
gies by health care systems can
increase their range to reach un-
connected individuals. Handheld
devices can receive brief an-
nouncements, appointment re-
minders, or health tips. Wellness
webs (composed of individuals
with similar health-related needs
who are connected electronically
to enhance their ability to work
together and better meet their
health goals) targeting individuals

50. to receive messages according to
need or interest can be built
through collaborations among
community agencies, insurance
companies, and providers. These
technologies may also facilitate
connection with African Ameri-
cans and Hispanics. Technology
alone cannot alleviate disparities
in health care access, but a na-
tional study finds that although
people with higher incomes use
the Internet more for their health
records, people with lower in-
comes and people without college
degrees are likely to benefit more
from having their health informa-
tion online.36 Connection fosters
more regular, better coordinated
care, with improved outcomes.
Individuals: Building and
Maintaining Personal Health
Records
Many health care systems and
insurance companies offer public
health records (PHRs) to help pa-
tients coordinate their care and
keep in touch with their providers.
PHRs allow patients to view parts
of their own health record (e.g., lab
results, medication history), input

51. data (e.g., weight, blood pressure),
and schedule appointments. In-
surance companies are the pri-
mary providers of PHRs (51%),
followed by health care providers
(26%), but other health-related
organizations offer PHRs to mem-
bers (e.g., the American Heart
Association).36
Recently, both Google (Google
Health) and Microsoft (HealthVault)
introduced publicly available,
Internet-based PHRs at no cost.
Although these providers pledge
that PHR data will be secure and
not exploited for advertising or
other commercial purposes, users’
trust must be developed. Only
25% of potential users report
a willingness to use a PHR from
a private corporation.36 Despite
these concerns, PHR options have
considerable value. PHRs contain
functions that can import data
over the Internet directly from
specific health devices (e.g., blood
pressure monitors, weight scales,
blood glucose tests) plugged into
computers or handheld devices.
Both Google and Microsoft prod-
ucts allow individuals to designate
specific entities for data sharing.
With this feature alone, commu-
nities can implement and monitor

52. targeted health-promotion pro-
jects and measure progress and
outcomes from self-reported data
through a central location that
links participants. As individuals
join health care systems, become
insured, or relocate, they can ex-
port and import data to electronic
health records and back into PHRs
no matter where they receive care.
MOVING FORWARD
Although they do pose some
risks, using electronic technologies
to improve conventional health
services offers opportunities to
reduce health disparities. It is in-
structive to examine successful
community programs and imper-
ative to continue assessing how
best to harness these technologies
to advance public health goals
without compromising privacy
or security. Researchers should
conduct rigorous reviews of the
literature to identify promising
programs and recommend appro-
priate policies and safeguards.
Developing new avenues of
communication with various
health care systems has already
helped unconnected individuals
access health care in some regions.

53. Through strategic collaborations
using established technologies, or-
ganizations such as participants in
the Substance Abuse and Mental
Health Services Administration’s
Drug Free Communities program
have been successful, including
incorporating accountability mea-
sures. One program in Florida
(http://www.onevoiceforvolusia.
org/data.htm) has included in its
mission promoting cross-system
data-gathering capabilities to ad-
dress high-risk groups. Inclusive
consensus building and commu-
nity action planning approaches
have produced successful systems-
level interventions in several US
cities and counties,41---43 enabling
vulnerable groups to take charge
of their health information.44 Such
initiatives not only create alterna-
tive access but also have important
policy implications aligned with
Healthy People 2020 objectives.45
TABLE 1—US Internet Connection Types and Use by Region:
October 2007
South (n = 43 370) Midwest (n = 26 714) West (n = 26 203)
Northeast (n = 21 553)
Urban
(n = 32 510), No. (%)

54. Nonurban
(n = 10 861), No. (%)
Urban
(n = 20 461), No. (%)
Nonurban
(n = 6253), No. (%)
Urban
(n = 23 322), No. (%)
Nonurban
(n = 2882), No. (%)
Metro
(n = 18 154), No. (%)
Nonurban
(n = 3399), No. (%)
Dial-up 2872 (8.8) 1976 (18.2) 1752 (8.6) 1374 (22.0) 2093
(9.0) 531 (18.4) 1345 (7.4) 632 (18.6)
Broadband 16 772 (51.6) 3682 (33.9) 10 689 (52.2) 2379 (38.0)
13 227 (56.7) 1376 (47.7) 10 088 (55.6) 1635 (48.1)
No use 9704 (29.9) 4073 (37.5) 5693 (27.8) 1776 (28.4) 5883
(25.2) 724 (25.1) 5421 (29.9) 859 (25.3)

55. Overall use 19 740 (60.7) 5677 (52.3) 12 494 (61.1) 3764 (60.2)
15 390 (66.0) 1918 (66.6) 11 450 (63.1) 2287 (67.3)
Source. Data from the US Census Bureau, Current Population
Survey, Internet Supplement, October 2007.35
COMMENTARY
July 2011, Vol 101, No. 7 | American Journal of Public Health
Crilly et al. | Peer Reviewed | Commentary | 1165
For example, health policy deci-
sions are generally derived from
medical data from health care
systems and insurance compa-
nies.46 Using these data as the
primary source can invite the ap-
pearance of full knowledge when
the data actually represent only
individuals connected to the sys-
tem; excluding the unconnected
generates an incomplete picture
that can perpetuate disparities in
access and outcomes.
The new federal health reform
legislation is already promoting
creative changes by increasing
funds for community health
centers to boost the number of
treated patients.47 Under this
legislation, millions of Americans
will gain access to care previously

56. unavailable to them. There is an
urgent need to effectively handle
this expected rapid growth. Shift-
ing greater focus, responsibility,
and control to the local commu-
nity constitutes one encouraging
approach. For example, collabo-
ration to better distribute care
may prompt more efficacious
distribution of health care fund-
ing. At the time of this study,
health care dollars flowed directly
to formal providers as reim-
bursement for services rendered.
The distribution of funds depends
entirely on the delivery structure
of those entities, not the broader
needs of the community. Without
appropriate strategies and infra-
structure, communities will have
little power to create meaningful,
effective partnerships with health
care systems to assist their mem-
bers in need.
Obviously, the challenges, limi-
tations, and risks of using these
technologies must be understood
and continuously evaluated. New
applications for health-related
purposes raise many security and
privacy concerns that require the
attention of consumer health
advocates and health policy ana-
lysts. Although the Internet re-

57. mains the largest venue for access-
ing health-related information and
health-monitoring tools, it is neither
ubiquitous nor a panacea.
Electronic technologies must
be more broadly and effectively
implemented to realize their po-
tential to improve health out-
comes for vulnerable populations,
lower costs, and reduce health
disparities. To advance this
promising application, we need to
devote more attention to devel-
oping creative approaches to help
people access appropriate re-
sources, devising better safe-
guards, measuring effects and
evaluating programs, and sharing
information about programs that
are working. But by exploring
how to use technology to reach
unconnected individuals, com-
munity systems and health care
providers can begin to address
the problem––and enhance the
coordination of health care for
millions of Americans. j
About the Authors
At the time of this study, John F. Crilly
was with the Department of Psychiatry,
University of Rochester Medical Center,
Rochester, NY, and the US Department of
Veterans Affairs, Canandaigua, NY. Robert
H. Keefe is with the School of Social

58. Work, State University of New York,
Buffalo. Fred Volpe is with the Drug Free
Communities Program, Substance
Abuse and Mental Health Services
Administration, Leesburg, VA.
Correspondence should be sent to Robert
H. Keefe, PhD, ACSW, Associate Professor,
School of Social Work, 685 Baldy Hall,
University at Buffalo, State University of New
York, Buffalo, NY 14260-1050 (e-mail:
[email protected]). Reprints can be
ordered at http://www.ajph.org by clicking
the ‘‘Reprints/Eprints’’ link.
This commentary was accepted August
11, 2010.
Contributors
J. F. Crilly conceptualized the article and
led the writing of the initial draft. R. H.
Keefe edited the initial draft, aided in
writing, and led the revisions. F. Volpe
outlined the strategies and provided
examples of programs that have shown
some success.
Acknowledgments
The authors acknowledge Diana J. Biro,
PhD, for her assistance editing the article.
References
1. Jha AK, DesRoches CM, Campbell
EG, et al. Use of electronic health records
in U.S. hospitals. N Engl J Med. 2009;360

59. (16):1628---1637.
2. Petigara T, Anderson G. Implement-
ing electronic health records: an update.
Health Policy Monitor. 2007;10:1---7.
Available at: http://www.hpm.org/survey/
us/b10/3. Accessed June 11, 2010.
3. Bar-Yam Y. Improving the effective-
ness of health care and public health:
a multiscale complex systems analysis. Am
J Public Health. 2006;96(3):459---466.
4. Chernichovsky D, Leibowitz AA. In-
tegrating public health and personal care in
a reformed US health care system. Am J
Public Health. 2010;100(2):205---211.
5. Baum FE, Begin M, Houweling TA,
Taylor S. Changes not for the faint-
hearted: reorienting health care systems
toward health equity through action on
the social determinants of health. Am J
Public Health. 2009;99(11):1967---1974.
6. Baum F. The New Public Health. 3rd
ed. Melbourne, Australia: Oxford Univer-
sity Press; 2008.
7. Raphael D. Social Determinants of
Health: Canadian Perspectives. Toronto,
Canada: Canadian Scholars Press, Inc;
2004.
8. Starfield B, Shi L, Macinko J. Contri-
bution of primary care to health systems

60. and health. Milbank Q. 2005;83(3):457---
502.
9. World Health Organization. Primary
Health Care Now More Than Ever. The
world health report 2008. Available at:
http://www.who.int/whr/2008/08_over
view_en.pdf. Accessed August 4, 2010.
10. Davis K, Schoen C, Stremikis K.
Mirror, Mirror on the Wall: How the
Performance of the U.S. Health Care System
Compares Internationally. 2010 update.
Available at: http://www.integratedcare.
org/Portals/0/Topics/Comparison%
20US%20Health%20Care%20
internationally.pdf. Accessed August 4,
2010.
11. Schoen C, Collins SR, Kriss JL, Doty
MM. How many are underinsured? Trends
among U.S. adults, 2003 and 2007. Health
Aff (Millwood). 2008;27(4):w298---w309.
12. Cox JL. The challenge with tracking
health outcomes. Can J Clin Pharmacol.
2001;8(suppl. A):10A---16A.
13. Short BC, Ballantyne CM. Quality
assessment and lipid management: con-
siderations for computer databases for
tracking patients. Am J Cardiol. 2000;85
(3A):52A---56A.
14. Shumaker SA, Dugan E, Bowen DJ.
Enhancing adherence in randomized

61. controlled clinical trials. Control Clin Tri-
als. 2000;21(suppl 5):226S---232S.
15. Kirkman MS, Williams SR, Caffrey
HH, Marrero DG. Impact of a program
to improve adherence to diabetes guide-
lines by primary care physicians. Diabetes
Care. 2002;25(11):1946---1951.
16. Tung Y, Duffy LC, Gyamfi JO, et al.
Improvements in immunization compli-
ance using a computerized tracking sys-
tem for inner city clinics. Clin Pediatr
(Phila). 2003;42(7):603---611.
17. Freedman DO, Kozarsky PE, Weld
LH, Cetron MS. GeoSentinel: the global
emerging infections sentinel network of
the International Society of Travel Medi-
cine. J Travel Med. 1999;6(2):94---98.
18. Graham-Bermann SA, Seng J. Vio-
lence exposure and traumatic stress
symptoms as additional predictors in
high-risk children. J Pediatr. 2005;146(3):
349---354.
19. Dubowitz H, Black MM, Kerr MA,
et al. Type and timing of mothers’ vic-
timization: effects on mothers and chil-
dren. Pediatrics. 2001;107(4):728---735.
20. Zuckerman B, Sandel M, Smith L,
Lawton E. Why pediatricians need law-
yers to keep children healthy. Pediatrics.
2004;114(1):224---228.

62. 21. Uninsky PB. The second mouse’s
agenda: a comprehensive model for pre-
venting and reducing violence in the lives
of school aged children. In: Lieberman
AF, DeMartino R, eds. Johnson & Johnson
Pediatric Roundtable: Interventions for
Children Exposed to Violence. Available at:
http://www.partnershipforresults.org/
pdfs/SecondMouse.pdf. Accessed June
11, 2010.
22. Puma M, Bell S, Cook R, et al. Head
Start Impact Study: First Year Findings.
Executive summary; June 2005. Wash-
ington, DC: US Department of Health and
Human Services, Administration for
Children and Families. Available at:
http://www.acf.hhs.gov/programs/opre/
hs/impact_study/reports/first_yr_
execsum/first_yr_execsum.pdf. Accessed
June 11, 2010.
23. Olds DL, Kitzman H. Review of
research on home visiting for pregnant
women and parents of young children.
The Future of Children. 1993;3(3):53---92.
24. Lane SD, Rubinstein RA, Keefe RH,
et al. Structural violence and racial dis-
parity in HIV transmission. J Health Care
Poor Underserved. 2004;15(3):319---335.
COMMENTARY
1166 | Commentary | Peer Reviewed | Crilly et al. American

63. Journal of Public Health | July 2011, Vol 101, No. 7
25. Chaulk CP, Pope DS. The Baltimore
City Health Department program of di-
rectly observed therapy for tuberculosis.
Clin Chest Med. 1997;18(1):149---154.
26. Crawford JA, Hargrave TM, Hunt A,
et al. Issues in design and implementation
of an urban birth cohort study: the Syr-
acuse AUDIT project. J Urban Health.
2006;83(4):741---759.
27. Fox S, Jones S. The Social Life of
Health Information. Pew Internet and
American Life Project; June 2009. Avail-
able at: http://www.pewinternet.org/
Reports/2009/8-The-Social-Life-of-
Health-Information.aspx. Accessed June
11, 2010.
28. Horrigan J. Wireless Internet Use. Pew
Internet and American Life Project; July
2009. Available at: http://pewinternet.
org/Reports/2009/12-Wireless-Internet-
Use.aspx. Accessed June 11, 2010.
29. Crilly J, Lewis J. Internet-based psy-
chiatric interventions: applications for
rural veterans at risk for suicide. Pro-
ceedings of the International Conference
on Society and Information Technology:
ICST 2010. Orlando, FL; April 2010.

64. 30. Pharow P, Blobel B. Public key
infrastructures for health. Stud Health
Technol Inform. 2003;96:111---117.
31. Itkonen P. Information technology
as a tool for change. Int J Med Inform.
1999;56(1---3):135---139.
32. Asch SM, McGlynn EA, Hogan MM,
et al. Comparison of quality of care for
patients in the Veterans Health Adminis-
tration and patients in a national sample.
Ann Intern Med. 2004;141(12):938---
945.
33. Evans DC, Nichol WP, Perlin JB.
Effect of the implementation of an enter-
prise-wide electronic health record on
productivity in the Veterans Health Ad-
ministration. Health Econ Policy Law.
2006;1(pt 2):163---169.
34. Copps MJ. Bringing Broadband to
Rural America: Report on a Rural Broad-
band Strategy. Federal Communications
Commission; May 22, 2009. Available at:
http://hraunfoss.fcc.gov/edocs_public/
attachmatch/DOC-291012A1.pdf. Ac-
cessed June 11, 2010.
35. US Census Bureau. Computer and
Internet Use in the United States: October
2007. US Bureau of Labor Statistics.
Current population survey. Available at:
http://www.census.gov/population/
www/socdemo/computer/2007.html.

65. Accessed June 11, 2010.
36. California HealthCare Foundation.
Consumers and Health Information Tech-
nology: A National Survey. Available at:
http://www.chcf.org/publications/2010/
04/consumers-and-health-information-
technology-a-national-survey. Accessed
June 11, 2010.
37. Frost JH, Massagli MP. Social uses
of personal health information within
PatientsLikeMe, an online patient com-
munity: what can happen when patients
have access to one another’s data. J Med
Internet Res. 2008;10(3):e15.
38. Palen L, Vieweg S, Liu SB, Hughes
AL. Crisis in a networked world: features
of computer-mediated communication in
the April 16, 2007 Virginia Tech event.
Soc Sci Comput Rev. 2009;27(4):467---
480.
39. Needleman S. Firms get a hand with
twitter, facebook. Wall Street Journal. Oc-
tober 1, 2009: B5. Available at: http://
online.wsj.com/article/SB12543576458
3454651.html?mod = WSJ_hpp_sections_
tech. Accessed June 11, 2010.
40. Chen PW. Medicine in the age of
twitter. The New York Times. June 11,
2009. Available at: http://www.nytimes.
com/2009/06/11/health/11chen.html?_r
=1&hpw=&pagewanted=print. Accessed

66. June 11, 2010.
41. Pollard RQ. Mental health services
and the deaf population: a regional con-
sensus planning approach. J Am Deaf
Rehabil Assoc. 1995;28(3):1---47.
42. Butterfoss FD, Kelly C, Taylor-
Fishwick J. Health planning that magnifies
the community’s voice: allies against
asthma. Health Educ Behav. 2005;32(1):
113---128.
43. Robinson K, Elliott S, Driedger SM,
et al. Using linking systems to build
capacity and enhance dissemination in
heart health promotion: a Canadian
multiple-case study. Health Educ Res.
2005;20(5):499---513.
44. Keefe RH, Lane SD, Swarts SJ. From
the bottom up: tracing the impact of four
health-based social movements on health
and social policies. J Health Soc Policy.
2006;21(3):55---69.
45. US Department of Health and Hu-
man Services. Developing Healthy People
2020. Access to Health Services. Available
at: http://www.healthypeople.gov/
hp2020/Objectives. Accessed June 10,
2010.
46. Keefe RH, Hall ML. Managed be-
havioral health care provider practice
patterns: a new item for the public policy

67. agenda. J Health Soc Policy. 2000;12(1):
11---40.
47. National Conference of State Legis-
lators. Federal Reform Implementation.
May 14, 2010. Available at: http://
www.ncsl.org/Default.aspx?TabID =
160&tabs = 831,139, 1156#1156.
Accessed June 10, 2010.
COMMENTARY
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Crilly et al. | Peer Reviewed | Commentary | 1167
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