INVITED COMMENTARY
How Personal Is the Personal Health Record?
I
n this era of high medical costs, constrained resources, and outcome accountability, the PHR has emerged as a potential organizing principle. The PHR may mean different things to different people. On one extreme, the PHR exists as a provider-centric extension of the electronic medical record that includes a physicianmaintained problem list, medication and allergy list, upcoming appointments, and recent test result summary.1 On the other extreme, the PHR may comprise a patientcentric, patient-maintained summary of health-related matters, even specifying advanced directives.2 Regardless of the operational definition, the PHR has evolved. It reflects growing medical complexity, imperfect provider-to-provider handoffs, and patient involvement with innovative technology that extends beyond the Internet and desktop computing. In parallel, the aging population with dissociated family units and the predominance of chronic medical conditions underscore needs unmet by the traditional, hardcopy medical record in a single location.3 The accompanying article by Yamin and coworkers addresses some of the opportunities and future hurdles to developing, augmenting, and disseminating PHRs. The authors stress the PHR’s potential value to increase access to personal health information in a secure manner. This capacity may be both as a data repository for test results, medication lists, allergies, and medication refills as well as to foster electronic communication between patients and their health care providers and to provide links to credible online health information. By streamlining many administrative and clinical functions, the PHR supports the patient-centered medical home and moderates the future costs of care, especially for chronic illness. These positive results occur only if several conditions are met. Patient users must be willing to register for its use, acquire and maintain computer literacy and computer access, perceive sufficient value, and be able to use the system in a consistent or even extensive manner. The authors’ report reflects an integrated health care delivery system using a practice-mediated PHR; their cross-sectional study focuses on both adoption and use. Although methodologically constrained from directly questioning potential users, the authors used geocoding as a proxy for direct measurement of race/ethnicity, SES, and other potentially predictive variables. Among the 5 potential system functions, they observed that approximately 86% of the system’s actual use was roughly equally divided among care-related questions, medication refills, and appointments and referrals. Adoption rates were highly correlated with white race, higher annual house-
hold income, multiple comorbidities, and an aggressive marketing strategy. Despite an apparent racial/ethnic and economic digital divide, race and SES showed little association with PHR use after adoption and only small differences for retrieving online health information and participating in social networking. By eliminating the financial barrier to participation, the integrated health care delivery system they describe fostered more than twice as many log-ins for messages as for looking up other information. As the authors point out, racial/ethnic minority populations may receive inferior medical care and remain less likely to adopt provider-centric PHRs. The causes are multifactorial, but the net result remains that the digital divide threatens to exacerbate medical disparities. Some recent efforts have focused on sharing or providing open access to medical records at single institutions or linked sites.4 Although promising, the results may not address all needs.5 In parallel, other developments complicate the PHR horizon. Increasingly, other data-exchange technologies, especially mobile “smart” telephones rather than laptop or desktop computers, have captured the attention and interest of the instantly mobile society. Fully 88% of wireless Internet users look for health information online, and mobile Internet users are more likely than others to contribute comments and reviews to online conversations about health and health care.6 To remain relevant, PHRs need to explore and cultivate alternative technologies as they appear and become established. Perhaps more subtle, the PHR’s potential for becoming a lifelong repository of medical information raises concerns of “big brother” acquiring access and control over the data and its uses. Under the legal definition of a medical record, such data are discoverable with the proper subpoena, and patients justifiably prefer to control the access and content of their health information.7 These concerns return us to considering just how “personal” the PHR is to be. At least 2 patient-centric models have appeared in partial response. The first model is the near-explosion of products for patients to maintain their PHRs.8 The array includes nearly 100 paper-based products, software applications, and Internet services, each designed to collect, store, and make available at the user’s prompt the rich details of a personal medical background and preferences. They vary greatly in cost, userfriendliness, and relative security, and few of the existing products are designed to interface with provider-centric electronic medical records and PHRs, such as the one described by Yamin and coworkers. As a result, patients and their families would likely retain the primary burden of entering and updating data in exchange for controlling
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access but would lose integration with provideroriented electronic systems. Such trade-offs may discourage or immobilize potential users of PHRs. Others have developed ambitious community-wide PHRs that bridge the private and public domains. Whatcom County, the area surrounding Bellingham, Washington, has sponsored and encouraged individuals to create and maintain their own PHRs, often with forceful support from caregiving family members and friends of the elderly, the frail, and the chronically ill. After extensive negotiation and some trial and error, beginning in 1994, the community sponsors created the Whatcom Health Information Network and aligned providers, clinics, hospitals, and others to evolve near-seamless integration across the continuum of care. Currently, the system links nearly 200 000 citizens, 1 hospital, 9 skilled nursing facilities, multiple clinics, and 99% of the 400 local physicians. The result is that the system supports coordination and communication across health care organizational lines on behalf of patients, primarily to create and distribute the Shared Care Plan. In turn, patients allow, by user, selective viewing, uploading, downloading, revising, and compiling of data to facilitate care without relinquishing most controls on content, accuracy, comprehensiveness, and up-to-date status. All users have a unique log-in, and patients sign a HIPAA-compliant (Health Insurance Portability and Accountability Act) consent to share data before populating the Shared Care Plan PHR.2 The benefits and lessons of such community integration are profound. The PHR enumerates medications, allergies, immunizations, surgical procedures, hospital visits, insurance providers, physician and family contacts, and advance directives. Medication reconciliation becomes quicker, easier, and more accurate than ever before. Disparate generalists and specialists may keep track of test results, procedures, and treatments, even if they are not part of a single provider group or even practice at the same hospital. Caregivers have proxy access and can both enter information as well as view the current status of an elderly parent, regardless of their location.
One of the most subtle yet innovative components remains the private-public interface that allows but does not require bidirectional exchange of data and updates. To retain control and confidentiality, patients may withhold some information, whether about unfilled prescriptions, food supplements, or second-opinion consultations. Providers, clinics, and hospitals have all endorsed the sharing of test results and lists of medications, allergies, and procedures to expedite patient care and to minimize duplication. At this moment, we can glimpse future visions for PHRs and guide steps in desired directions toward a more patient-centered, integrated approach that is truly personalized. Peter Rudd, MD, FACP Theresa Frei, RN, MBA Author Affiliations: Division of General Internal Medicine, Department of Medicine, Stanford University School of Medicine, Stanford, California (Dr Rudd); and Business Process Transformation, Sutter Physician Services, Sacramento, California (Ms Frei). Correspondence: Dr Rudd, Division of General Internal Medicine, Department of Medicine, Stanford University School of Medicine, Medical School Office Bldg, Room X-216, Stanford, CA 94305 (
[email protected]). Financial Disclosure: None reported. 1. Tang PC, Lee TH. Your doctor’s office or the Internet? two paths to personal health records. N Engl J Med. 2009;360(13):1276-1278. 2. Shared Care Plan. https://www.sharedcareplan.org/HomePage.aspx. Accessed September 12, 2010. 3. Wakefield DS, Mehr D, Keplinger L, et al. Issues and questions to consider in implementing secure electronic patient-provider web portal communications systems. Int J Med Inform. 2010;79(7):469-477. 4. Delbanco T, Walker J, Darer JD, et al. Open notes: doctors and patients signing on. Ann Intern Med. 2010;153(2):121-125. 5. Kahn JS, Aulakh V, Bosworth A. What it takes: characteristics of the ideal personal health record. Health Aff (Millwood). 2009;28(2):369-376. 6. Fox S, Jones S. Pew Internet & American Life Project: The Social Life of Health Information. Washington, DC: Pew Research Center; June 2009. 7. Croll P. Privacy, security and access with sensitive health information. Stud Health Technol Inform. 2010;151:167-175. 8. American Health Information Management Association (AHIMA). My PHR. http://www.myphr.com/resources/choose.aspx. Accessed September 5, 2010.
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