News

April 2007
Personal Health Records: Wave of the Future in Health Care

A young child with cystic fibrosis receives a just-in-time text message alerting her to take the proper medication. An overweight patient uses a handheld personal digital assistant (PDA) to monitor blood glucose, blood pressure, and exercise data, which is uploaded wirelessly to his provider’s electronic medical records. A person with diabetes monitors her nutrition intake, medication, and physical activity levels through her cell phone. This is the future of health care within our Web culture. The individual’s health needs are addressed at point of need—at home, school, work, or in transit—via a communication tool called the Personal Health Record, or PHR.

Patricia Flatley Brennan, PhD, RN, is poised to redesign health care by way of the PHR. She is the Lillian S. Moehlman-Bascom Professor of Nursing at the UW–Madison School of Nursing and a professor in the Department of Industrial and Systems Engineering on the UW campus.

Project HealthDesign director Patricia Flatley Brennan (left) and deputy director Gail Casper stand near the entrance to the Health Sciences Learning Center. (Photo: Bob Rashid)“As a nurse and technology engineer,” says Brennan, “I am interested in creating a suite of PHRs that can work together to improve the daily lives and long-term health of patients in very practical ways. We intend to create consumer oriented tools that allow consumers to actively engage in their own care in order to live healthier lives.”

The PHR, Brennan explains, will hold the totality of a patient’s health history—for example, medical and clinical records showing course of care, personal health observations, and insurance claims records pertinent to health outcomes. Placed within a broader health records system, the PHR will be coupled with decision support tools—alerts, reminders, and health risk appraisals—that permit consumers to make sound decisions in self-managing their care.

The UW nurse-researcher is director of a $4.4 million initiative called “Project HealthDesign: Rethinking the Power and Potential of Personal Health Records.” It is funded by the Robert Wood Johnson Foundation (RWJF) and the California HealthCare Foundation (CHCF)—two private philanthropies that seek to improve health care and access to health services for the nation’s consumers.

When the project began in summer 2006, Brennan put out a call to teams of experts around the country who could design applications driven by the PHR to meet the diverse health needs of consumers, their families, and populations. Along with Gail Casper, PhD, postdoctoral researcher at the School of Nursing and deputy director of the project, Brennan has identified nine groups of grantees, to date, who will receive up to $300,000 to design applications.

One team of design experts from the University of Massachusetts Medical School, for example, is targeting patients suffering from non-cancer chronic pain who must manage complex medication regimens, follow physical therapy protocols, maintain pain diaries, and keep track of multiple clinic appointments. The application to manage this therapy plan will run on a handheld PDA that will interface with the individual’s personal health data to meet treatment and information needs.

Brennan, foundation colleagues, and the teams of experts are currently in the throes of building the cyber architecture, that is, a common platform that supports the applications, making them interoperable. “We encourage people to think of the basic medical record as a platform upon which developers can build limitless applications,” says Stephen Downs, senior program officer and deputy director of RWJF’s Health Group. “The idea is analogous to the role that the Internet plays as a platform that enables services like eBay, Amazon, and YouTube.”

Project HealthDesign’s model of PHR descended from a first-generation model—an aggregation of data tethered to one provider with limited accessibility by other providers. “Think of this new generation of PHRs,” Brennan explains, “not just as repositories of data, but as a suite of tools that help people understand and act on the data.”

Once PHRs inform applications, Brennan explains, the result is better health: “If a patient has allergies, he service about pollen counts fed instantly into his PHR, which could also capture measures of his ability to breathe comfortably and then provide an alert when pollen counts are likely to trigger an asthmatic experience.”

And nursing will play an integral role in this consumer-driven health care system. Brennan likens the dynamic to building a three-legged stool. If the stool were patient care, she says, its three legs would represent the capacities of the patient, the competencies of the nurse, and the resources available via computer or other digital technology.

“A laudable goal of nursing is to support patient independence to the extent possible,” she says. “And nurses,” adds Brennan, “can assist patients in building self-monitoring strategies and in interpreting observations about their health and well-being to get realtime decision support.”

As a member of the Governor’s eHealth Care Quality and Patient Safety Board, Brennan sees the PHR and its applications dovetailing with Governor Jim Doyle’s future plans for a statewide electronic record system (ERS). “PHRs,” Brennan notes, “will serve as repositories for parts of the data in EHRs.”

A bold vision like Project Health- Design brings with it an arsenal of questions: How do we aggregate the information correctly? What will the repositories of data look like? Will a common language be needed for the consumer to translate medical records?

The most weighted concern, however, for both vision architect and consumer, is the privacy-security issue surrounding networked health records. Identity theft or fraud, data wrongly used by marketers, and data mining for litigation purposes are just a sampling of scenarios that threaten the confidentiality of the consumer’s PHR.

Brennan and colleagues have sought the expertise of the BioEthics Center at the University of Miami as well as the Markle Foundation, an organization committed to protecting consumers’ privacy within emerging communication technologies. The explicit consultation of the University of Miami’s Bioethics Center will ensure that confidentiality protections are embedded in Project HealthDesign.

According to Zoë Baird, JD, president of the Markle Foundation, their research has shown that Americans think it is important to be able to access all of their own medical records to manage their own health. “People now recognize the potential benefits of health information technology,” Baird notes, “but they also are thoughtful about creating an information environment that protects their privacy and their identity. We found that fully three-quarters of all Americans think that the government has a role in establishing the rules that will protect the privacy of their information.”

As a prototype for the nation’s new system of health care, Project HealthDesign has, so far, correctly identified what is important in the eyes of the consumer. “The power and potential of this technology,” Brennan notes, “to help consumers exert more control over their own health—and in so doing, greatly improve our health care system—is awesome to ponder, and I am excited to be a part of it.”