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Two related but distinct options are emerging. One is a stand-alone personal health record (PHR), such as the Internet-based tools for patients developed by Google, Microsoft, WebMD, health insurance plans, and others.1 Our bet, however, is that the other option, the "integrated PHR" that is an extension of physicians' electronic health records (EHRs), will go further in facilitating the type of physician–patient relationship that will improve health and health care, at a lower cost.
What if Mary could view her test results within hours after her blood was drawn? What if she could upload her home glucometer and blood-pressure readings so she could graph them and see how changes in her behavior affect them? What if her health care team received copies of her readings and could recommend dose adjustments for her medications? And what if it all happened without an office visit?
This scenario is no longer futuristic. Integrated PHRs are already used by millions of patients, and their adoption is reaching a tipping point in some regions of the country. For example, among the 250,000 patients in the San Francisco Bay area who receive primary care at a region of the Palo Alto Medical Foundation, 50% of adults use the group's PHR. Although most U.S. patients and their physicians still live in the world of paper medical records, the Obama administration has set a goal of computerizing all of America's medical records within 5 years as a means of improving efficiency, quality, and safety and ultimately saving money. The economic recovery package recently signed into law by President Obama will provide bonus payments of $44,000 to $64,000 to physicians who adopt and effectively use EHRs from 2011 through 2015, and it is likely that penalties will then be introduced for physicians who do not adopt the technology. These incentives will probably make the use of EHRs common among all but the most resistant physicians during the next several years. Among the many questions likely to arise during this transformation will be how the information in health records will reach patients.
There are several similarities between integrated PHRs and the stand-alone versions developed by Microsoft and Google. Stand-alone PHRs often start with data imported from sources such as administrative claims and pharmacy records, but some can also accept information from physicians' EHRs. In both types of PHRs, some information can be input directly by patients — either uploaded from home monitoring equipment or entered manually in nutrition, exercise, or other logs of daily observations.
But unlike the stand-alone models, integrated PHRs are essentially portals into the EHRs of patients' health care providers.2 They can offer patients as much access to data, scheduling resources, and communication among members of the health care team as providers are willing to permit. Some physicians are wary of letting patients see laboratory results and book their own appointments, but provider groups around the country are pushing the envelope and giving patients access to information and the ability to share it with others.
We believe that the more access provided, the stronger the partnership that will be cultivated between patients and clinicians. For example, integrated PHRs offer a convenient way for physicians and patients to create a shared patient record and formulate a shared treatment plan.2 PHR tools can help patients collaborate with their health care team in tracking and managing their own chronic conditions. Graphs of clinical measurements over time are particularly helpful to patients who need to correlate health-related behavior (nutritional intake, exercise, and adherence to medication) with results (glucose levels, weight, and pain assessments).
For patients attempting to choose between integrated and stand-alone PHRs, the advantages and disadvantages of the alternatives may be difficult to assess. Google and Microsoft are hoping that their robust technical platforms and large market presence can persuade major sources of data (such as pharmacies, laboratory operators, and health care organizations) to deposit patient information in their centralized repositories. Then they hope to attract third-party developers to provide applications that use this stored information. In the absence of widely adopted data standards for interoperability, however, even these large corporate entities are finding it challenging to import and combine the information in ways that preserve its meaning. Furthermore, the large repository companies have yet to exchange data with one another.
From a consumer's perspective, the lack of federal privacy protection for confidential health information stored by entities that are not covered by the Health Insurance Portability and Accountability Act (HIPAA), such as commercial PHRs and repositories, remains problematic. The formulation of public policy governing the reuse of patient information for purposes other than providing care lags behind the development and availability of large databases.3
If integrated PHRs are to have an expanded role in patient care and communication, there must be business models supporting their use. So far, the systems' costs are being underwritten by provider organizations, and the business case for their use in the fee-for-service health care environment is weak. For PHR use to be sustainable, reimbursement policies must provide rewards for "non–visit-based" care4 that might improve health outcomes and lower costs by averting the need for visits and hospitalizations. So far, the Obama administration's focus has been on interoperable EHRs, and rightly so. However, we believe that integrated PHRs — and the patient–provider partnerships they enable — will play a major role in influencing health-related behaviors that are crucial to improving U.S. health.
Operators of stand-alone PHR repositories are counting on other ways of making money on their services. Google, for example, hopes to drive increases in its general search revenue by attracting people to its site to use Google Health. Other services, such as Microsoft HealthVault, may rely on revenue from third-party developers who use patient data in their applications. Since the American Recovery and Reinvestment Act of 2009 did not include vendors of commercial PHRs as business associates, except in very limited circumstances (such as when a vendor creates a PHR specifically for a covered entity), vendors such as Microsoft and Google are not covered by HIPAA. Microsoft says it will seek patients' consent before sharing data with third parties, but none of these application suppliers are covered by HIPAA. Whatever the business model for PHRs, lawmakers should require that the consumer user be clearly informed about the identity of the system's operator and the financial terms of any direct or indirect use of patient data.
It's difficult to predict what roles Google, Microsoft, and health plans will play in the PHR marketplace in the long run. There aren't major technical barriers to entry, but data sharing will require the development and adoption of technical and content standards — and a desire on the part of physicians and patients to contribute information to commercial repositories, with their growing contingents of third-party application developers. Since the majority of physicians still don't have electronic medical records, and patients often seek care outside their providers' delivery system, these stand-alone PHRs may serve as data intermediaries. However, if the Obama initiative to replace paper records with interoperable EHRs in the next 5 years succeeds, the landscape will change dramatically, and the need for intermediaries may disappear.
Users of integrated PHRs have demonstrated that creating shared records for patients and their health care team can enhance patients' ability to become active partners in their own health care.5 This is a try-it-you'll-like-it type of innovation. As physicians increasingly adopt EHRs, we expect community interest in PHRs to grow organically. Ultimately, it will no doubt become difficult for physician groups to survive in the marketplace without them.
Dr. Tang reports serving on the Google Health advisory council. No other potential conflict of interest relevant to this article was reported.
Source Information
Dr. Tang is vice president and chief medical information officer at the Palo Alto Medical Foundation, Palo Alto, CA. Dr. Lee is the network president for Partners HealthCare System, Boston, and an associate editor of the Journal.
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