Patients & Consumers

By Karandeep Singh, Sean R. Meyer, and John M. Westfall doi: 10.1377/hlthaff.2018.05404 HEALTH AFFAIRS 38, NO. 3 (2019): 352–358 ©2019 Project HOPE— Consumer-Facing Data, The People-to-People Health Foundation, Inc. Information, And Tools: Self- Management Of Health In The Digital Age

Karandeep Singh (kdpsingh@ umich.edu) is an assistant ABSTRACT Consumers have greater access to data, information, and tools professor of learning health to support the management of their health than ever before. While the sciences, internal medicine, and information at the sheer quantity of these resources has increased exponentially over the University of Michigan, in Ann Arbor. past decade, the accuracy of consumer-facing resources is variable, and the value to the individual consumer remains uncertain. In general, the Sean R. Meyer is a PhD student in design science at quality of these resources has improved, mostly because of improvements the University of Michigan. in web and mobile technologies and efforts to restructure

John M. Westfall is a senior delivery to be more patient centered. We describe the major initiatives scholar in family medicine at that have led to consumers’ increased access to both their own health the Eugene S. Farley Jr. Health Policy Center, University of data and performance data for health care providers and hospitals. We Colorado, in Aurora, and chair explore how search engines and crowdsourced review websites help and of family medicine and medical director for whole hinder the dissemination of medically accurate information. We highlight person care at the Santa emerging examples of websites and apps that enable consumers to make Clara Valley Medical Center Health and Hospital System, medical decisions more in concert with their preferences. We conclude by in San Jose, California. describing key limitations of consumer-facing resources and making recommendations for how they may best be curated and regulated.

he doctor-patient relationship his- often expected) to make choices about their care torically has been heavily imbal- in partnership with providers. anced, with doctors being the sole In the context of health, we use the term data party with direct access to patients’ to refer to facts or observations about one or health and medical information more patients, such as the results of a laboratory Tabout diagnoses and treatments. The maturation test. Information consists of data that have been of electronic health records (EHRs), patient por- aggregated or summarized in some way that tals, and websites targeting health care consum- makes them usable by consumers. Examples of ers has led to a rapid expansion in the number health information include results from search and types of resources that consumers can use in engines on health topics or information about making decisions about their health. At the same the quality and cost of care. Tools are interactive time, health systems are in the midst of a major representations of data or information that pro- cultural shift, recognizing that empowering vide a deeper level of ongoing engagement, such consumers with easier access to health data, in- as consumer-facing health apps. formation, and tools may have a number of downstream benefits for health outcomes and satisfaction.1,2 As these resources become more Consumers Have Greater Access To accessible, patients can take a more active role in Their Health Data Than Ever Before managing their care. Thus, patients are increas- The adoption of EHRs and accompanying ingly finding themselves in the role of consum- patient portals has greatly increased consumers’ ers, where they have the opportunity (and are access to their own health data. The adoption of

352 Health Affairs March 2019 38:3 Downloaded from HealthAffairs.org on April 30, 2019. Copyright Project HOPE—The People-to-People Health Foundation, Inc. For personal use only. All rights reserved. Reuse permissions at HealthAffairs.org. EHRs was largely driven by financial incentives Harborview Medical Center volunteered to par- put in place by the Health Information Technol- ticipate in the OpenNotes demonstration proj- ogy for Economic and Clinical Health (HITECH) ect, which was designed to explore the impacts of Act, part of the American Recovery and Reinvest- easily accessible doctors’ notes on both the pa- ment Act of 2009. The incentives were designed tients and providers. The project was founded by to drive health care professionals to adopt Tom Delbanco and Jan Walker of Harvard Medi- “certified” EHRs designed to meaningfully im- cal School and initially funded by the Robert prove patient care, although the set of functions Wood Johnson Foundation. Surveys demonstrat- required for certification was not defined at the ed that while patients favored open notes, pri- outset. Discussions organized by the Consumer mary care physicians’ opinions of sharing their Engagement Workgroup of the Markle Founda- notes varied.8 A follow-up quasi-experimental tion, a nonprofit organization focused on health study evaluating the impact of OpenNotes found care quality improvement and adoption of that “patients accessed visit notes frequently, emerging technologies, led to the idea of making a large majority reported clinically relevant patient records downloadable at the click of a benefits and minimal concerns, and virtually button.3 This idea came to be known as the Blue all patients wanted the practice to continue.”9 Button initiative.When the Office of the National Through adoption by EHR vendors, over thir- Coordinator for Health Information Technology ty-three million patients now have access to their was tasked with defining functions of an EHR doctors’ notes.10 Organizers of the OpenNotes that would constitute “meaningful use” under demonstration say that doctors should allow pa- the HITECH Act, the ability to view online, down- tients to provide feedback on the notes to further load, and transmit patient health data within reinforce the collaborative relationship between four business days of the data being available doctors and patients.11 to the provider was included as a core objective, Patients are increasingly generating their own enshrining the Blue Button initiative in national health data as well, ranging from step counts to policy. Inclusion of Blue Button functionality electrocardiograms. Pedometry has long been in an EHR became a required prerequisite for available through specialized devices, but its in- health care professionals to become eligible for troduction into iOS and Android smartphones in incentive payments, which drove EHR vendors 2013 has turned most modern smartphones into to quickly add this functionality. The Veterans relatively accurate pedometers.12 In 2014 Apple’s Health Administration (VHA) added the Blue HealthKit enabled apps to store, access, and ex- Button to its patient portal in 2010. This was change tracked health data directly on the iOS significant because the VHA is the largest inte- operating system. This is particularly beneficial grated health system in the United States and for consumers using digital health-oriented does not stand to benefit from the financial in- devices such as weight scales and glucometers. centives included in the HITECH Act. Subse- These devices typically share their data wirelessly quent evaluations found that a third of veterans with companion smartphone apps using Blue- had used the Blue Button, and that nearly three- tooth, and easing information exchange be- quarters of users felt that using it helped them tween apps makes it possible for one app to pro- better understand their health.4 One veteran’s vide medical advice based on a measurement experience with the Blue Button illustrates its taken by a different app. potential impact on self-management of health: More advanced medical sensing capabilities “The first time I used it I was really happy because are also being incorporated into consumer- I was participating in my health care. I mean you friendly devices. In 2012 AliveCor released a can actually see real time what’s going on.”5 With smartphone case—approved by the Food and the success of Blue Button as a way of download- Drug Administration (FDA)—with the capability ing patient records, the focus of the initiative— of measuring a single-lead electrocardiogram now termed Blue Button 2.0—has shifted toward for the identification of cardiac arrhythmias. In integrating patient records with apps to support November 2017 this functionality was extended patient care and research.6 to smartwatches when KardiaBand became the Although the Blue Button initiative gave pa- first FDA-approved medical device accessory for tients direct access to much of their health infor- Apple’s smartwatch for the detection of atrial mation,4 one area that this initiative avoided al- fibrillation.13 In less than a year Apple integrated together was access to doctors’ notes because of this functionality directly into its smartwatches concerns over potential negative consequences alongside other health-oriented functionality related to patients not understanding medical enabling the detection of falls.14 Thus, smart- jargon in the notes.7 To explore these issues, over watches appear poised to give consumers access 100 primary care physicians at Beth Israel Dea- to health data that previously required special- coness Medical Center, Geisinger Health, and ized medical devices.

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Online Tools Make Accurate Health Information More Accessible To The largest area of Consumers The internet has long been a source of health growth is the information for consumers. Although the begin- nings of this phenomenon are not well docu- development of mented, the Pew Research Center’s first poll interactive apps and on the subject, conducted in 2000, found that 55 percent of internet users had searched for websites that enable health information online at a time when only 43 percent of Americans had used the internet.15 consumers to directly By 2013, 59 percent of US adults had searched for health information online, and 77 percent of participate in self- such searches began on a general web search engine such as Google or Bing.16,17 The phrase management. “Dr. Google” has been used to describe the phe- nomenon of relying on a general search engine to find health information.18 In 2013 over a third of US adults reported going online to determine what medical condition they or someone else might have.17 pare individual physicians. Over the past twenty years a number of spe- A number of search engines also focus on price cialized search engines have also been developed transparency in health. Individualized price in- to help patients understand and make decisions formation is often difficult for consumers to ob- based on the quality and cost of care. Hospital tain because costs are often negotiated between Compare was developed in 2002 by the Centers providers, hospitals, and insurance companies, for Medicare and Medicaid Services (CMS) to and these vary by region. Well-known resources help patients select hospitals.19,20 Since Hospital for comparing prices include Healthcare Blue- Compare’s inception, its scope has expanded to book, which provides price information for pro- include process outcomes, patient satisfaction cedures; FAIR Health, which uses billed records measures, readmission rates, and surgical out- to estimate medical and dental costs; Amino, comes. Hospitals are incentivized to measure which uses claims data from both private and and report these data to CMS through the Hos- government insurers to estimate procedure pital Value-Based Purchasing Program, which costs; GoodRx and Blink Health, which provide rewards hospitals for strong or improving per- price information on generic prescription med- formance on a variety of quality measures. The ications; ClearHealthCosts, which was created U.S. News and World Report hospital rankings use by journalists and draws from a combination this data along with Medicare administrative of cash, government, and crowdsourced prices; claims data, American Hospital Association An- and Guroo, which provides national, state, and nual Survey data, and publicly available clinical local cost and quality information for common registry data to rank hospitals across multiple health conditions and services.26–28 Search en- specialties.21 There is mounting evidence that gines for prescription medications have emerged websites such as Yelp, where consumers rate as a result of both the rising popularity of online restaurants and other businesses, may be useful shopping and the opaque pricing at retail phar- in measuring aspects of hospital quality directly macies.29 relevant to patients. Studies evaluating both the Yelp star ratings as well as the textual content of Yelp reviews found significant correlations with Interactive Tools Have Potential To items in the Hospital Consumer Assessment of Transform How Consumers Manage Healthcare Providers and Systems (HCAHPS) Their Health survey, which is used by Hospital Compare to The largest area of growth in digital health in the provide a consumer perspective on hospital past five years is the development of interactive quality.22–24 In 2015 the nonprofit organization apps and websites that enable consumers to di- ProPublica released a surgeon scorecard to help rectly participate in self-management. A Pew Re- consumers compare case volume and complica- search Center survey conducted in 2012 revealed tion rates for individual surgeons across a large that 69 percent of US adults keep track of at least spectrum of surgeries.25 In contrast to other data- one health indicator (such as weight, diet, exer- driven review sites, the ProPublica scorecard was cise routine, and symptom), and 21 percent of notable because it enabled consumers to com- those who track indicators do so using some

354 Health Affairs March 2019 38:3 Downloaded from HealthAffairs.org on April 30, 2019. Copyright Project HOPE—The People-to-People Health Foundation, Inc. For personal use only. All rights reserved. Reuse permissions at HealthAffairs.org. with published literature showing that peer sup- Consumer-facing port workers may reduce hospital admissions.38 Shared decision making, an activity that websites focused on usually involves a significant time commitment by providers,39 is also becoming streamlined health have evolved to through implementation via online platforms. engage patients in Shared decision making involves clinicians and patients working together to develop a care receiving and plan informed both by patients’ priorities and medical evidence. Shared decision making is providing peer most relevant to decisions among multiple med- ically appropriate treatments with different risk- support. benefit profiles. A prototypical example of this is prostate cancer, where the decision to treat with surgery or radiation or to monitor the disease depends on a variety of patient factors. The Per- sonalized Patient Profile (P3P) is a platform for shared decision making that helps men newly form of technology.30 The number of health- diagnosed with prostate cancer choose among related mobile apps is steadily rising and now surgery, radiation, or watchful waiting based exceeds 318,000.31 Smartphone apps are unique- on their priorities and preferences.40,41 Other ly positioned to affect consumers’ management examples of tools for shared decision making of their health because they are often within include for the primary prevention physical reach; are constantly connected to the of heart disease and the choice of dialysis modal- internet; and can provide real-time notifications ity for end-stage kidney disease.42,43 to the consumer, thus enabling a real-time feed- back loop. These apps are more accessible than ever, as over three-quarters of Americans own Limitations Of Digital Consumer smartphones, and smartphone ownership is ris- Health Resources ing among older adults (46 percent among peo- In the face of remarkable growth in the digital ple ages sixty-five and older) and people with low data, information, and tools available to con- household incomes (67 percent among house- sumers, these resources have limitations with holds earning less than $30,000 per year).32 Pop- important societal implications. ulations targeted by these apps span the spec- Patient portals have lowered the barrier for trum of high-need, high-cost populations, with consumers to access their health data, but the functionalities ranging from educating patients portals’ use is not clearly linked to impacts on and tracking health measures to rewarding users health outcomes, costs, and use of health for good health behaviors.33 Examples of health- services.44 A systematic review identified twelve oriented apps rated highly by consumers include randomized controlled trials of patient portals MyFitnessPal, Mango Health, Lose It!, and the that spanned several patient populations (that mySugr Diabetes Tracker Log. The most robust is, people with diabetes, heart failure, hyperten- literature supporting the role of apps in patient sion, or depression and those who used preven- care is in diabetes mellitus, where apps have tive services) with mixed results. While use of a been shown to reduce hemoglobin A1c in ran- patient portal alone did not consistently demon- domized controlled trials.34,35 strate health benefits, the small number of stud- Consumer-facing websites focused on health ies that combined case management with portal have also evolved to engage patients in receiving use did show benefits.44 Given that patients’ and providing peer support. Patient-led commu- interest in and ability to use portals is linked nities and support groups are proliferating to multiple demographic factors, using portals through specialized platforms (such as Patients- to engage patients could worsen disparities in LikeMe) and traditional social media (for exam- care.45 A systematic review found that patients ple, Facebook groups).36,37 Patients using such who are younger than age thirty-five, members platforms have reported a number of benefits, of ethnic minority groups, healthier, or less ed- including feeling better informed on choice of ucated are the least likely to use patient portals, treatments and side effects.36 A minority of pa- whereas people with disabilities and chronic tients with mood disorders reported that use of a conditions, frequent users of health services, peer support platform led to decreasing hospital- and caregivers of elderly parents or children izations. This finding, although preliminary and are the most likely to use them. in need of further confirmation, is consistent Managing consumer-generated data in patient

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portals is another potential problem. In Octo- considered by the algorithm could have large ber 2014 Epic Systems, the largest EHR vendor impacts on the patient’s premium. In Europe in the US, integrated its MyChart patient portal the General Data Protection Regulation man- application with Apple’s HealthKit. Duke Uni- dates a “right to explanation” for algorithms that versity and Mayo Clinic are known to be using have a substantial effect on users, giving con- the HealthKit functionality in conjunction with sumers a right to know how the algorithm works the MyChart patient portal app, but most health and to potentially opt out.55 No such regulation systems are still grappling with whether to inte- exists in the United States. grate this consumer-generated data into the EHR Providers’ attempts to identify high-quality when it may be inaccurate and disrupt the clini- health tools for patients have been a challenge. cal work flow.46,47 Instead of waiting for health Prior efforts to curate digital tools have largely systems to figure out how to integrate consumer- failed to increase physicians’ adoption of high- derived data into the EHR, Apple is bringing the quality tools in their practices. A recent effort led EHR data directly to consumers: In March 2018 by the American Medical Association, the Apple announced that thirty-nine hospitals Healthcare Information and Management Sys- would be integrating their EHRs directly into tems Society, the American Heart Association, consumers’ iOS devices.48 and the DHX Group is attempting to tackle this The role of search engines as initial and some- problem through the formation of a group called times final sources of health information is an- Xcertia.56 In 2018 Xcertia released preliminary other area of concern. Searches have the poten- guidelines for app privacy and security, and the tial to harm consumers if search results are group plans to finalize these and release app inaccurate or misleading, and the term cyber- content, operability, and usability guidelines chondria has been used to describe an inappro- in 2019.57,58 priate escalation in patients’ health concerns re- sulting from a web search.49 Focusing on the worst case at the expense of the commonplace Recommendations For Addressing is one of the core conundrums in the realm of Limitations And Risks In Digital consumer-facing data and information. Another Resources problem lies in lay interpretation of scientific Addressing the limitations and risks in consum- information. Google has been combating this er-facing digital resources should be a priority. problem by partnering with Mayo Clinic and The Federal Trade Commission (FTC) regulates other health partners. Since mid-2016 searching deceptive claims, while the FDA regulates apps on Google for symptoms or medical conditions that function like medical devices. Much else can results in the display of reputable Mayo Clinic– be done to improve the usefulness and safety of derived health information alongside the usual digital resources for consumers. search results.50 Health systems should integrate consumer- While public quality reporting is well inten- generated data into their EHRs, giving priority tioned, the caveats associated with each of the to data elements most likely to benefit patients’ quality-reporting tools might not be sufficiently health. Health systems should transparently re- communicated to consumers. For instance, the port quality measures directly to consumers to star rating system used by Hospital Compare may alleviate concerns about inaccurate data being penalize hospitals that serve people of lower used by public reporting websites. The FTC socioeconomic status, who have worse health should take a more active role in the enforcement outcomes compared to people of higher socio- of its existing authority through the FTC Act economic status.51 Linking hospital payments to (signed into law in 1914 and since amended) quality measures has the potential to dispropor- pertaining to misleading claims made by app tionately affect vulnerable populations by penal- developers. Guideline-making bodies should izing the hospitals that serve them, further mar- include examples of apps or tools to engage ginalizing these populations. consumers in the implementation of recommen- Another example comes from ProPublica, dations related to the tracking of health informa- whose ratings have problems with both validity tion. The rationale underlying these recommen- and reliability. Patients cannot make an in- dations is in the online appendix.59 formed decision when the underlying informa- tion is inaccurate.52–54 Issues of transparency also extend to proprie- Conclusion tary algorithms and decision tools that drive Newly empowered through data, information, decisions about health care and insurance. For and tools, consumers are better able to monitor instance, a patient’s health insurance rate may their health and engage health care providers be determined by an algorithm, and the factors in informed discussions about their care. As

356 Health Affairs March 2019 38:3 Downloaded from HealthAffairs.org on April 30, 2019. Copyright Project HOPE—The People-to-People Health Foundation, Inc. For personal use only. All rights reserved. Reuse permissions at HealthAffairs.org. patients increasingly exercise their autonomy in fully realize the benefits. This culture shift will medical decision making as a result of more read- need to occur in several different areas, includ- ily available resources, health professionals have ing the integration of consumer-generated data a duty to support consumers in ways that go well into clinical care, embracing transparency beyond the bedside. While access to digital con- around quality of care, and health care providers’ sumer resources is steadily growing, a culture curation of tools that consumers can use to shift will be required—particularly among health follow through on health-focused recommen- professionals—before consumers and patients dations. ▪

Karandeep Singh received grant support for this work from the National Institute of Diabetes and Digestive and Kidney Diseases (Grant No. 5K12DK111011).

NOTES

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