A New Vision for Personal Health Records
Download "A New Vision for Personal Health Records" in pdf format.
Health care institutions and software developers currently offer an array of personal health record (PHR) products that give patients access to institutional health care records or help them compile freestanding collections of personal health observations. While this move toward paperless systems is a significant step in the right direction, most PHRs derived from institutional records generally become inaccessible to patients when they change providers, while those that are freestanding rarely integrate well with institutional records. And, because many current PHR products are proprietary in nature, most consumers cannot build on or customize existing PHRs to fit their widely varied health needs.
Leaders of Project HealthDesign aim to move the field toward a broader vision of how PHRs might help consumers lead healthier lives. The program, a national initiative funded by the Pioneer Portfolio of the Robert Wood Johnson Foundation (RWJF) and the California HealthCare Foundation, supports the development of PHR systems designed to help patients not simply access their own medical records, but use personal health information in real-time to manage and improve their own care.
Project HealthDesign starts from the perspective that PHRs ought to reflect and respond to what is going on in our individual lives.
“The focus of PHR development so far has been on what is contained in the medical system: claims, lab results, clinical data, diagnosis,” says Patricia Flatley Brennan, RN, PhD, professor of Nursing and Industrial Engineering at the University of Wisconsin-Madison and director of Project HealthDesign’s National Program Office. “That’s a good start, but we believe that information about how you live and how you feel on a day-to-day basis is important, and can be incorporated into PHRs to empower patients to make better health care decisions on a daily basis.”
“Project HealthDesign hopes to usher in widespread development of next-generation PHR systems that integrate personal medical information with an array of smart, practical tools that overlay the core record to help patients actively manage chronic conditions and offer suggestions to improve their health,” says Brennan. It is critical to simultaneously stimulate the marketplace to enhance innovation in personal health applications. Project HealthDesign believes that public-private-patient partnerships hold great promise in creating bold visions of novel, useful personal health applications that enable patients to play an active role in their health and health care. To accomplish this vision, it is necessary to engage both the health care community and the business sector in collaborative efforts that meld emerging directions in technology development with clearly articulated goals and benefits, which include improved health and increased involvement of individuals and families.
“The current understanding of a PHR is of an online repository of all of the information in your medical record— and that’s way too limiting,” says Stephen Downs, SM, senior program officer and deputy director of RWJF’s Health Group. “We want to stretch the vision so that technology designers and policy-makers see PHRs as resources that don’t just allow patients to review their medical information, but instead enable them to make more informed decisions because of it. Project HealthDesign is supporting design teams that are working with people to understand the actions they need to take to manage their health on a day-to-day basis, and then exploring how PHRs can provide them with relevant information about these actions at the point in time that makes the most sense.”
Since its launch in December 2006, Project HealthDesign has awarded grants to nine multi-disciplinary teams of medical, design and informatics experts. The teams are now beginning to design next-generation prototype PHR applications specially developed to meet specific patient needs.
“The value of having your medical record in a PHR lies in how that information can help you manage and improve your health — such as taking your medications on time, controlling your blood sugar and weight, avoiding allergic reactions or having richer, more constructive communications with physicians,” Downs said. “That’s the direction that personal health records need to move toward to be most useful. We also need to expand our understanding of the health information that’s relevant. Beyond thinking about diagnoses, lab results and current prescriptions — what you’d typically find in a medical record — we need to look at pain symptoms, sleep, diet, exercise and actual medication intake. Understanding that information can go a long way toward helping someone manage a chronic disease.”
Ultimately, Project HealthDesign is bringing together designers and policy-makers to look at the big-picture of emerging technologies like PHRs and rethinking how they can be designed and produced in ways that help consumers manage their health care choices and achieve better health outcomes.
