The Robert Wood Johnson Foundation (RWJF) has launched a landmark program to design and test bold ideas for how consumers can use information technology to better manage their health and navigate the health care system.
Project HealthDesign: Rethinking the Power and Potential of Personal Health Records,a $4.1 million initiative, has selected eight multidisciplinary teams that will build new tools that advance the field of personal health record (PHR) systems. Grant teams will work collaboratively to design and test a suite of PHR applications that can be built upon a common platform to help people better meet their health care needs in an integrated fashion.
Such PHR tools may remind a patient to take medications, provide tailored decision prompts to help people adhere to treatment regimens for diabetes or pain therapy, or transmit data to providers – such as blood pressure readings or exercise levels – that are collected from patient self-testing and biomonitoring devices in the home.
"It's not just the wider use of personal health records or online access to the data they store that is so revolutionary," said Stephen Downs, S.M., RWJF senior program officer and deputy director of the Health Group. "Project HealthDesign is challenging the PHR field to focus on the potential for patients, providers and caregivers to use this information to improve their health. The design of the systems over which this information flows is critical, and that is why we're excited to support the efforts of these technology pioneers to develop the next generation of PHR systems."
In this two-phased initiative, design teams will first participate in a six-month structured process to design user-centered personal health applications that address specific health challenges faced by individuals and caregivers. In the subsequent 12-month phase, prototypes of these personal health tools will be tested with target populations.
At every step, teams will work closely with a specialist in the ethical, legal and social implications (ELSI) of health information technology and personal data sharing. Ensuring the privacy of patient information and gaining an early understanding of the ELSI issues associated with the next generation of PHR systems are key objectives guiding the efforts of Project HealthDesign grantees. RWJF is supporting the ELSI consultation through a separate $149,000 grant to Kenneth W. Goodman, Ph.D., founder and director of the University of Miami's Bioethics Program and associate professor in its School of Medicine.
The eight grantee teams were chosen from a pool of more than 165 applicants and each has been selected to receive an 18-month, $300,000 grant. Primary funding for Project HealthDesign is provided by RWJF's Pioneer Portfolio, which supports innovative projects that may lead to breakthrough improvements in health and health care. RWJF is pleased to collaborate with The California HealthCare Foundation, which contributed an additional $600,000 to the initiative. The program is directed by Patricia Flatley Brennan, R.N., Ph.D., professor of Nursing and Industrial Engineering at the University of Wisconsin-Madison.
"designing a variety of applications that can operate seamlessly within a broader PHR system, we can provide practical, consumer-oriented tools that fit the needs, preferences and lifestyles of individuals," said Dr. Brennan. "Our vision is that the bold design efforts led by Project HealthDesign grantees will help empower patients to use PHR tools to manage health information, communicate with their providers and caregivers, and make sound decisions that can improve their health and health care."
Program activities will launch immediately with an initial design workshop involving all grantees, where they will further define the needs and preferences of the intended users of the PHR applications. More information about the project is available at. www.projecthealthdesign.org