Patient-Centered Care

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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 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 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.

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-

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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 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 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

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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 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 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.

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

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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- 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 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- 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.

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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 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- 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, 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

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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 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 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 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.

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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- 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 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.

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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- 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.

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 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

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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 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.

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