New Frontiers in Personal Health Records

A "Report Out" from Project HealthDesign and Forum on Next-Generation PHRs

Design Teams Unveil Innovative PHR Applications that Help People Take Charge of Their Health

Nine research teams from across the country today unveiled innovative prototypes of personal health record (PHR) applications that provide a glimpse of the "next generation" of PHRs. The PHR applications are the result of 18 months of intensive research and design by multidisciplinary teams from some of the most prestigious institutions in the nation. The prototypes range from a medication management system to help children with cystic fibrosis manage their disease (housed in an age-appropriate form, like a stuffed animal or cell phone), to a sophisticated "conversational assistant," a computerized tool that helps people with congestive heart failure manage their health from home through a series of voice-activated questions and responses that they can quickly share with their medical providers.

The nine design teams are supported by Project HealthDesign, a $5-million national program of the Robert Wood Johnson Foundation (RWJF) that is revolutionizing the purpose and potential of electronic PHRs. Each team created applications that help move the perception of PHRs from static repositories of health information to dynamic, tailored applications that allow people to easily and actively manage their health as they go about their daily lives. The project also ensured that these PHR tools can readily share common technical functions and operate on a common technology platform.

"Giving people online access to their medical information is important, but it's not enough to help them truly take charge of their health. They need smart tools that can interpret their data and provide customized feedback to guide their health decisions, day in and day out," says Risa Lavizzo-Mourey, M.D., M.B.A., RWJF president and CEO. "By putting consumers at the center of the design process, we have demonstrated a powerful vision of how personal health records and new technologies can empower people to better manage their health and work together with their providers to get the care they need."

Project HealthDesign, based at the University of Wisconsin-Madison, is funded through RWJF's Pioneer Portfolio, which supports innovative ideas that may lead to significant breakthroughs in the future of health and health care. Additional support is provided by the California HealthCare Foundation.

"We challenged the grantee teams to aggressively push the boundaries when it came to the role that PHRs could play in people's daily lives," says Patricia Flatley Brennan, R.N., Ph.D., national program director and professor of nursing and industrial and systems engineering at the University of Wisconsin-Madison. "Their success has helped create a fundamentally different and more powerful model of PHRs—one that will stimulate new innovation and creativity throughout the PHR arena."

The teams' PHR application designs run the gamut of patient populations and needs, but all marry technology with useful information recorded from users' daily lives in order to produce action-oriented feedback for managing their health.

  • Stanford University and Art Center College of Design
  • T.R.U.E Research Foundation
  • A team at designed a PHR application to help children with cystic fibrosis play a larger role in taking care of themselves. Team members developed a device that can be incorporated into different "skins" (such as a stuffed animal or cell phone) to work with the PHR to help kids take the right medications at the right times, alert parents and caregivers if doses are missed, manage refills, and more. 
  • RTI International
  • The team designed a PHR application to help breast cancer patients gain control over the overwhelming process of treatment. The PHR tool helps women better understand and coordinate their care plan by integrating information on upcoming doctor appointments, prescriptions, questions to ask, etc., and syncing that data with their personal electronic calendars. It also provides links and prompts with more information. 
  • A team at the designed a portable touch-screen tablet computer that older patients with complex medication regimens could receive upon hospital discharge. The tablet helps users organize prescriptions, stay on track with taking doses and avoid medication errors, while also syncing information with their doctors' records. Other components can help schedule prescriptions, order refills and prepare for doctor visits.
  • The team designed a personal digital assistant (PDA) to help patients with chronic pain tightly manage their medications. The team's PDA prototype enables users to easily track their pain symptoms throughout the day in ways that make sense for them and draws on the medication regimens prescribed by doctors to generate convenient, understandable prompts. Based on how they're doing, patients could receive tailored alerts for when they should or should not take medications, and at what doses. 
  • The team designed a prototype system that uses a "conversational assistant" to provide congestive heart failure patients with a "daily check-up." Through voice-activated questions and responses or text-typed chat, patients share information relevant to their condition. The computer interprets that input to provide personalized recommendations based on established guidelines and collects longitudinal data to share with the patients and their care providers.
  • A team from the designed a PHR system to help people with diabetes record blood glucose levels and other information, such as blood pressure, food intake and exercise levels. The application wirelessly uploads these readings over a cell phone to the person's PHR and their medical provider. Providers in turn review the information and provide feedback and counsel to the patient through the PHR application.  

In addition to the design prototypes, Project HealthDesign worked with a technical team from Sujansky & Associates LLC in San Carlos, Calif., to develop and release a set of functional requirements and technical specifications that allow different PHR applications to securely share medical and other information, with the consumer controlling who has access to what information.  

"Capturing observations from the home and interacting with patients in everyday life helps put patients on their own health care team," says Paul Tang, M.D., M.S., an internist and vice president, chief medical information officer at the Palo Alto Medical Foundation, and chair of Project HealthDesign's national advisory committee. "The project has made a significant contribution to understanding how to make health more interactive by designing technology applications that work in tandem to meet patients' specific needs." 

The program also funded a group of experts led by Kenneth Goodman, Ph.D., founder and director of the University of Miami’s Bioethics Program and associate professor for its School of Medicine, to ensure that ethical, legal and social implications (ELSI) associated with innovative PHR systems were the kept in the forefront throughout the entire design process. Working closely with the grantee projects, Goodman’s team has allowed Project HealthDesign to surface important privacy and other ethical issues associated with next-generation PHRs.

Over the next several months, the Project HealthDesign grantee teams will work to publish details about their findings, as well as extend the use of their applications to the clinical practices connected to their institutions.

"It's a simple but radical idea to think that the technology for using your personal health record should be separated from the record itself," says Stephen Downs, S.M., senior program officer and deputy director of RWJF's Health Group. "Through this program, we're showing that the record can serve as a platform, upon which developers can build compelling applications to meet consumers' diverse health goals and needs. It's exciting to see this vision come to pass. With companies like Microsoft and Google entering the personal health space and offering PHR platform services, we're likely to see a thriving marketplace of tools and applications that help people make sense of their health information and act on it."

About the Robert Wood Johnson Foundation
The Robert Wood Johnson Foundation focuses on the pressing health and health care issues facing our country. As the nation's largest philanthropy devoted exclusively to improving the health and health care of all Americans, the Foundation works with a diverse group of organizations and individuals to identify solutions and achieve comprehensive, meaningful and timely change. For more than 35 years, the Foundation has brought experience, commitment and a rigorous, balanced approach to the problems that affect the health and health care of those it serves. When it comes to helping Americans lead healthier lives and get the care they need, the Foundation expects to make a difference in your lifetime.

About the California HealthCare Foundation
The California HealthCare Foundation is an independent philanthropy committed to improving the way health care is delivered and financed in California. By promoting innovations in care and broader access to information, our goal is to ensure that all Californians can get the care they need, when they need it, at a price they can afford. For more information on CHCF, visit us online at www.chcf.org.

About the University of Wisconsin
Founded in 1848, the University of Wisconsin-Madison is one of the nation's oldest and most comprehensive public research universities, with more than 41,000 enrolled students participating in 136 undergraduate degrees, 155 master's programs and 110 doctoral programs, and a research enterprise that generates more than $700 million in annual extramural support.

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