Article analysis Dreams and Nightmares: Practical and Ethical Issues for Patients and Physicians Using Personal Health Records

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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 advertized 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 benefits 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 corporate transformation of health care delivery, the loss
of patient privacy, the demand that patients bear more
responsibility in health care, and the unreflective takeover of the health care system by people who do not
understand medical care or how health care relationships unfold.3
For our purposes, we will consider EHRs impartially, 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 telephone and fax are generally limited to two people.
Breaches of phone line security, while possible and
perhaps even frequent, are unlikely to affect thousands 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 several 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 transition from a patient record that is physician-centered
to one that is patient-centered, prospective, interacMatthew Wynia, M.D., M.P.H., is the Director of the Institute 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 University in Portland, Oregon and his M.P.H. from Harvard University 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. candidate 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 Biology from Yale College and an M.H.S. in Health Policy from
Johns Hopkins University.
64
journal of law, medicine & ethics
Wynia and Dunn
Table I
PHR Definitions
America’s Health Insurance
Plans (AHIP):
The industry-model personal health record is a private, secure, Web-based tool maintained 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 information about an individual’s health or the health of someone in their care. (2007)
Healthcare Information and
Management Systems Society
(HIMSS):
An electronic Personal Health Record (ePHR) is a universally accessible, layperson comprehensible, 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, managed, 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 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)
Sources: (1) AHIP.org, (2) AMIA.org, (3) HIMSS.org, (4) NCVHS.HHS.org, (5) Connectingforhealth.org, (6) NAHIT.org
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 proponents 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 financial,5 it is our hypothesis that these practical barriers
reflect underlying questions and concerns about a few
core ethical issues — most notably privacy, equity, efficiency, 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 clinicians will be motivated to use them,7 two groups of
health care stakeholders are almost uniformly in favor
of PHRs: purchasers and policy makers.
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
SYMPO SIUM
Table II
PHR Functional and Payment Models
Functional Models (Endsley)1
(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 information, 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.
Payment Models (Gellman)2
(1)
Consumer pays for the service directly.
(2)
Advertising pays for the service.
(3)
Employer or health plan pays for the service.
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 (last visited February 19, 2009).
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 Employers can match PHRs to health risk assessment results,
which then serve as a funnel into disease prevention
programs,10 hoping that investments in PHRs will be
returned in health care savings and improved workforce productivity, though data to substantiate these
hopes are scarce. Some cite increases in employee
health awareness and participation in wellness programs as early measures of success.11
Policy makers generally share purchasers’ optimism
about PHRs. Even more so than for employers, perhaps, the promise of PHRs for federal and state policy
makers is wrapped up in the promise of EHRs in general: 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
66
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 support 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 Statistics (NCVHS) credits PHR systems with more than 30
benefits, including the ability to strengthen disease prevention, 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
makers have also suggested that PHR data could benefit research in biomedical science and public health.18
It is possible, however, that purchasers, policy makers, and others are expecting too much from the computerization of the health care system.19 Among policy
analysts, there are few EHR critics, but there are some
journal of law, medicine & ethics
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 create the policy environment needed to transform and
improve the way care is delivered.
With regard to PHRs, some policy experts have wondered whether PHRs will ever gain traction among consumers.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
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 information rather than less? While good information is clearly
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. Information will also tend to be retained if it supports a preconceived notion. Mental fatigue or decision fatigue
can occur from the labor of sifting through information, and fatigued decision makers might make fast,
careless decisions or suffer from decision paralysis.
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.
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 betterinformed, more engaged patients are better served in
the health care system.25 But there are several questionable 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
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 responsibility for health care decisions — are normative
claims about patient responsibilities. They are claims
the effects of health information technology on the physician-patient relationship • spring 2010
67
SYMPO SIUM
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 positive, 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 Foundation 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
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 quality of care.28 Meanwhile, large majorities worried that
PHRs might contain incorrect information, that privacy protections were not adequate, and that patients
might omit important information from their PHR.
These mixed views might simply reflect a wait-andsee 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 respondents 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 interpreted 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 physicians have experience with electronic records (in our
survey, 57% used some electronic records in their primary 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 submitted electronically,30 and E-prescribing among physicians 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-
68
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 important differences, but it is also helpful to consider the
different proposed uses of the PHR. PHRs can potentially 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 communication, including for scheduling appointments, receiving
testing or treatment instructions, asking questions,
and renewing prescriptions. Improving such communication may be of greatest value to people with chronic
illness, or those caring for someone with a chronic illness, 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 emphasized in discussions among developers and organizational purchasers, perhaps because these uses have a
stronger immediate business case. At the same time,
however, such uses of PHR data might raise concerns among patients and physicians. Using the data
i …
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