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News Release

Joslin Diabetes Center Chosen to ‘Rethink’ How Personal Health Records Can Help Consumers Better Manage Their Health

"Project HealthDesign" Awards Joslin Diabetes Center $300,000 Grant to Design and Test Innovative, Consumer-Centered PHR Applications. Joslin Diabetes Center One of Only Nine Teams Selected Nationwide

BOSTON, MA — December 14, 2006 — Joslin Diabetes Center has been selected as one of nine teams nationwide to participate in a landmark program from the Robert Wood Johnson Foundation (RWJF) to design and test bold ideas for how consumers can use information technology to better manage their health and navigate the healthcare system.

Project HealthDesign: Rethinking the Power and Potential of Personal Health Records, a $4.4 million initiative, announced grants to nine interdisciplinary teams that will build new tools that advance the field of personal health record (PHR) systems. Teams were chosen from a pool of more than 165 applicants and each has been selected to receive an 18-month, $300,000 award. 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 healthcare. RWJF is pleased to collaborate with The California HealthCare Foundation, which contributed an additional $900,000 to the initiative.

Joslin Diabetes Center and the other eight 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 healthcare 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.”

Joslin Diabetes Center will apply its $300,000 grant toward designing a personal health application that will help people with diabetes better manage their health any time and any where. The application will use the latest decision support tools and emerging technologies to provide specific and achievable lifestyle recommendations to its users. The lifestyle recommendations will be based on each user’s own personal information on diet, physical activity, medications, blood glucose levels and weight. 

“We are honored to be selected to participate in Project HealthDesign and are eager to explore a consumer-centered PHR system that will help people make better decisions about managing their diabetes. Many people with diabetes struggle to implement and maintain an effective regimen involving the many aspects of diabetes self-care,” said Stephanie Fonda, Ph.D., Assistant Research Investigator in Joslin Diabetes Center’s Beetham Eye Institute and Instructor of Medicine at Harvard Medical School (HMS). “For the past seven years, Sven-Erik Bursell, Ph.D., Director of the Joslin Vision Network TeleHealth Programs and Associate Professor of Ophthalmology at HMS, has led our group in developing and testing a Web-based comprehensive diabetes management program for providers to help them get and keep their patients on a diabetes care regimen. Now, through Project HealthDesign, we have the opportunity to focus on diabetes care from the perspective of the person with diabetes.”

Project HealthDesign, directed by Patricia Flatley Brennan, R.N., Ph.D., professor of Nursing and Industrial Engineering at the University of Wisconsin-Madison, will lead grant teams through a two-phased effort. Over the first six months, teams will participate in a 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 throughout the process, 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.
 
“By 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 healthcare.”
 
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. For further details about Joslin Diabetes Center, call 1-800-JOSLIN-1 or visit http://www.joslin.org/. More information about Project HealthDesign, including a listing of the other program grantees, is available at http://www.projecthealthdesign.org/.

About the Robert Wood Johnson Foundation

The Robert Wood Johnson Foundation focuses on the pressing health and healthcare issues facing our country. As the nation's largest philanthropy devoted exclusively to improving the health and healthcare 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 30 years, the Foundation has brought experience, commitment, and a rigorous, balanced approach to the problems that affect the health and healthcare of those it serves. By 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, based in Oakland, is an independent philanthropy committed to improving the delivery and financing of health- care in California.

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.