As described in Chapter 5, some providers have argued that there simply is not a strong business case for personal health records (PHRs). Structural and technical barriers, such as the reimbursement system and interoperability constraints, have created disincentives that weigh down the PHR cost-benefit analysis. However, promising models for delivering the benefits of PHRs to patients do exist. This chapter considers those entities that have discovered viable models for offering PHRs. It also asks how unconventional players, like Google and Microsoft, can harness the power of open platforms to stimulate the development and adoption of innovative personal health applications.
Some health care organizations have successfully implemented PHRs, offering appealing features and functionalities to millions of patients. Large health care systems like the Mayo Clinic, Geisinger Health System and Kaiser Permanente have fueled the momentum behind the adoption of “tethered PHRs.” Tethered PHRs offer patients a window into the provider’s existing electronic health record (EHR) alongside various features and functionalities like disease self-management and appointment scheduling (some of which were outlined in detail in Chapter 1 and Chapter 2 of this feature). At Kaiser Permanente, an integrated health care delivery system and insurance provider, more than 3 million members already take advantage of the tethered PHR. Kaiser’s patients can use their PHR to view their medical history, access test results, e-mail their physicians, refill prescriptions, schedule clinical visits, and keep track of personal data like diet and exercise.
Another successful model for delivering PHRs and their benefits to patients was pioneered by Dossia, a consortium of large employers that banded together in 2006 to leverage their size into more widespread access to personal health data. Whereas Kaiser Permanente’s PHR is populated with data from an existing EHR, Dossia and other freestanding PHRs (e.g., WebMD and Revolution Health) draw from multiple sources of patient data. Most freestanding PHRs require the patient to manually enter their data, the drawbacks of which we discussed in Chapter 1 of this feature. But with Dossia, employees at participating companies can elect to automatically pool data from insurance claims, laboratory results and/or physicians’ records in their PHR. Dossia operates on Indivo, a platform that is termed “open-source” because its application programming interface (API) is freely available to third-party application developers. Just like the common platform developed by Project HealthDesign, Indivo provides a set of core functionalities and technical specifications. By using a public, or “open,” infrastructure, Dossia hopes to accelerate the development of innovative personal health applications through competition among a dispersed market of third-party application designers.
Microsoft HealthVault and Google Health are perhaps the most well-known entrants to the PHR playing field. In 2007 and 2008, the software giant and the Internet powerhouse launched competing PHR services within six months of one another. Both Microsoft and Google are household names with the potential to make PHRs accessible to millions. While neither service is tethered to an existing electronic health record, both have worked to create partnerships with health clinics, pharmacies and other industry players. For example, both Google Health and HealthVault have partnerships with the Cleveland Clinic, CVS Pharamacy, Quest Diagnostics and other big names in health and health care. Through these strategic alliances, patients with data in tethered PHRs will increasingly be able to aggregate their disparate data using an online platform. The “cloud-PHR” (available exclusively via the Internet) model developed by Google Health and HealthVault enables patients to make their data portable, accessible and interoperable across multiple health care entities.
Even though Kaiser, Dossia, Google and Microsoft have successfully popularized PHRs among employers, physicians, insurers, and—in the case of Microsoft and Google—the public, it is not clear whether these PHR providers have discovered transferable or profitable business models. For example, because Kaiser Permanente is both health care provider and health insurance organization, it is in a unique position to afford and implement a PHR. While other insurance providers view e-mail as less lucrative than an in-person visit (and therefore do not cover it), Kaiser pays its doctors to answer e-mail and conduct e-visits because those activities ultimately lower the cost of medical care. But without reimbursement reform, it is uncertain whether Kaiser’s success can be replicated.
For the online PHR providers, the question of how to make their services profitable looms large. Microsoft and Google offer their PHRs to the public free of charge and they claim that their PHRs themselves will not contain advertisements. But, according to Part 3 of “Personal Health Records in a Digital Age,” a podcast series funded by the Pioneer Portfolio, “Microsoft users will see ads when they perform searches through the PHR, [and] Google expects to build brand loyalty to the Google search engine, which contains advertisements.” Brand loyalty aside, public opinion research (supported by the Robert Wood Johnson Foundation, AHRQ and the Markle Foundation) found that patients are far less likely to trust an Internet vendor with their private health information than they are to trust their personal physicians. Privacy advocates harbor concerns that online PHR services will share or sell consumers’ personal health information. Other experts argue that the stakes are so high for Internet-based PHRs providers that they are unlikely to violate patient trust. In a post that covers tethered PHRs, open platforms and adoption incentives, Chilmark Research notes that “Microsoft and Google have far more to lose if inappropriate use occurs compared to virtually any provider organization.” Part 4 of the PHR podcast series addresses these issues—trust, sustainability and profitability—in more detail.
The daunting challenge of aligning the incentives for PHRs has led doctors and policy-makers to call for the creation of a new health information infrastructure—not just for PHRs, but for all of health information technology. In early 2009 Kenneth Mandl, M.D., M.P.H., and Isaac Kohane, M.D., Ph.D, both professors at Harvard Medical School, advanced the notion of a flexible platform on which many competitive and substitutable applications can be built. In Kohane and Mandl’s perspective, “No Small Change for the Health Information Economy,” they articulate a vision for the health information infrastructure in which the “platform separates the system from the functionality provided by the applications.” The best-known example of the “platform/app” approach is, of course, the Apple iPhone. Apple publishes the programming interface, allowing application developers outside Apple to design applications. There are already more than 100,000 iPhone applications and the number keeps growing. An important feature, which Kohane and Mandl highlight, is that these applications are not only interoperable, but also substitutable. According to Kohane and Mandl, “The system should be sufficiently modular and interoperable so that a primary care provider could readily use a billing system from one vendor, a prescription-writing program from another, and a laboratory information system from yet another.” In two posts on the Pioneering Ideas blog, program officers from the Pioneer Portfolio respond to Kohane and Mandl’s approach and suggest several strategies to catalyze the platform/app model for PHRs.
Kohane and Mandl also emphasize that this platform should be built using open standards. Open standards would encourage competition among a vast marketplace of third-party developers to design applications that meet the highly diverse needs and preferences of patients. In this distributed market of patients, consumers and application designers, a bevy of applications for any given health-related transaction (e.g., filling a prescription, managing asthma) compete on value and cost. Kohane and Mandl’s vision for the future of HIT is similar to the model that Project HealthDesign has long supported for PHRs. One of the central aims of Project HealthDesign is to demonstrate the feasibility of a system of personal health information management tools that seamlessly operate on a common platform See Chapter 2 of this feature for a discussion of Project HealthDesign’s approach to stimulating innovation in the development of personal health applications..
There is a growing consensus that the new PHR ecosystem will be built around the platform/app model explored by Project HealthDesign and advocated by Kohane and Mandl. In Part 4 of the podcast series, Annalisa Silvestre, M.P.H., vice president of Online Services at Kaiser Permanente, argues that PHRs can only flourish in an “ecosystem that makes sense for everybody, where there is no one group that has to take on more of the burden than the other.” According to Silvestre, in this “reverse business model” consumers and connectivity drive decisions, as opposed to proprietary or competitive interests. Also in Part 4 of the podcast, David Lansky, Ph.D., CEO of the Pacific Business Group on Health, remarks that Google Health, HealthVault and Dossia are poised to serve as the bridge between far-flung data sources (e.g., health plans, laboratories, insurers) and the applications that patients want to use to help them manage their health. According to Lansky, open platforms are the “integrators, or the aggregators, of [those] data,” leaving health care providers free to go about their business of “delivering high quality medical care.” of the PHR podcast
Open platforms create a wide avenue for innovation in health care. They hold the potential to unleash the creativity of a decentralized but potent group of designers and innovators, while at the same time stimulating adoption and innovation around health information technology. The open-platform approach also suggests a new business model for HIT—one that can be applied outside of the ideal conditions of an integrated delivery system and can push past the limitations of proprietary Web-based services. Open platforms create incentives for patients to use PHRs, and they remove many of the costs to entry that previously fell to doctors, hospitals and practices.
While they resolve some of the questions of incentives explored in this chapter (and in Chapter 5), open platforms also surface new questions about the challenges and opportunities ahead for PHRs. In an interview with the Pioneer blog team, Patti Flatley Brennan, R.N, Ph.D., director of Project HealthDesign, discusses the barriers that need to be addressed in order to advance Project HealthDesign’s vision for PHRs. According to Brennan, one ongoing challenge will be to conceive of PHRs not as a “dominant binder or record that is the patient’s total life history, but rather think that there can be data from many places, that come together for many different kinds of uses.”
This Web feature has highlighted a number of unanswered questions for how to best implement the promise of PHRs. These challenges call for careful thought and creative innovation. More importantly, however, the perspectives, insights and take-aways of these chapters underscore the bright potential for the future of PHRs. In the second phase of Project HealthDesign, five grantee teams will forge ahead on the path to realizing the full potential of PHRs. They will face a number of challenges, including how to capture observations of daily living (ODLs); how to aggregate and analyze those data in a PHR; how to use the findings to inform the clinical encounter; and, ultimately, how to empower patients to understand, influence and improve their health.