Health IT, Privacy, Medical and Design Leaders Join Committee Overseeing National Program to Forge Future of Personal Health Records

    • June 30, 2009

Project HealthDesign: Rethinking the Power and Potential of Personal Health Records, a national program of the Robert Wood Johnson Foundation (RWJF), has announced additions to its national advisory committee (NAC). The committee will lead the next phase of the project, which pushes the future of personal health records and technologies. In the second phase of the Project HealthDesign, grantee teams will work closely with patients and providers across care settings to improve patient management of disease by collecting and interpreting “observations of daily living” (ODLs) into the clinical care process.

The committee is comprised of leaders in academia, technology, clinical practice and health and health care. Selected for a three-year term of service, the committee members include such industry luminaries as health care IT innovators John Halamka, M.D., M.S., of the Harvard Medical School and Beth Israel Deaconess Medical Center and Paul Tang, M.D., M.S., of the Palo Alto Medical Foundation, health privacy expert Deven McGraw of the Center for Democracy & Technology, designer John Maeda of the Rhode Island School of Design, and health care provider Carlos Roberto Jaén, M.D., Ph.D., of the University of Texas Health Science Center at San Antonio.  

The NAC members were chosen based on leadership in their respective fields, as well as their commitment to the goals of the program. As a part of their responsibilities, members will review submissions received in response to the program’s recent call for proposals, make recommendations on awards selections and provide RWJF with advice on overall program strategy. 

"We are thrilled to have such a diverse group of representatives, who are all leading innovators in their field, join our advisory committee,” said Project HealthDesign National Program Director Patricia Flatley Brennan, R.N., Ph.D., professor of Nursing and Industrial and Systems Engineering at the University of Wisconsin-Madison. “Their national leadership and longstanding commitments to improving people’s health will be an immeasurable asset to the program. Together, we hope to build toward a health care system where patients—especially those with chronic illness—are more engaged in managing their own health while working in tandem with clinicians."         

Launched in 2006, Project HealthDesign last fall presented a series of novel applications that could work in tandem with personal health records (PHRs) to help patients better manage their health. Nine multidisciplinary teams, supported through the program’s first round of funding, engaged in a user-centered design process to create a broad range of innovative IT tools that addressed specific but complex disease self-management tasks—from a cell phone-enabled medication management system that alerts children with cystic fibrosis when to take their medicines to a personal digital assistant that collects and supports self-reported pain and activity data and provides a fuller picture of patients’ everyday chronic pain experiences. 

The program, supported by the Robert Wood Johnson Foundation’s Pioneer Portfolio and led by a national program office based at the University of Wisconsin-Madison, recently closed its call for proposals for a second round of funding. In this new phase, grant recipient teams will demonstrate how health data from everyday life—observations such as meals, sleep, exercise levels, pain episodes and even moods—can be collected, interpreted and integrated into the clinical care process. These teams will work closely with patients and providers across different care settings to assess and test the potential of “observations of daily living” (ODLs) to help patients and physicians better manage chronic illnesses. Up to five grantee teams will be selected for 24-month demonstration projects.

“Our premise is that patient-recorded observations of daily living can help unlock information that providers and patients need to be talking about, but is not typically part of the clinical experience,” said Stephen Downs, S.M., assistant vice president of the Robert Wood Johnson Foundation’s Health Group. “Our NAC members provide us with the perfect mix of experience, expertise and innovative thinking to ensure that the program produces valuable insights—ultimately benefitting patients, providers and policymakers.”

The project recently received brief proposals from 145 teams from across the U.S. The committee will spend the next several weeks evaluating these brief proposals, inviting up to 25 teams to prepare full proposals. The program will announce the final list of grantees by December 1, 2009.

New members of the national advisory committee include:

  • Veenu Aulakh, M.S.P.H.
    Senior Program Officer, Better Chronic Disease Care, California HealthCare Foundation
  • Susannah Fox*
    Associate Director, Digital Strategy, Pew Internet & American Life Project
  • John D. Halamka, M.D., M.S.
    Chief Information Officer, Harvard Medical School and Beth Israel Deaconess Medical Center
  • J. Daniell Hebert
    CEO and Co-Founder, MOTO Development Group
  • Carlos Roberto Jaén, M.D., Ph.D.
    Professor and Chairman, Department of Family and Community Medicine, University of Texas Health Science Center at San Antonio
  • Deven McGraw, J.D., M.P.H., L.L.M
    Director, Health Privacy Project, Center for Democracy & Technology

The new members will be joined by seven existing committee members from the first round of the project:

  • David K. Ahern, Ph.D.
    Director, Health Information Technology Resource Center, Aligning Forces for Quality, Robert Wood Johnson Foundation, Brigham & Women's Hospital
  • Carmella A. Bocchino, R.N., M.B.A.
    Executive Vice President, Clinical Affairs and Strategic Planning, America’s Health Insurance Plans
  • Michael Christopher Gibbons, M.D., M.P.H.
    Associate Director, Johns Hopkins Urban Health Institute, Assistant Professor, Johns Hopkins’ Schools of Medicine and Public Health
  • Brandon Hull, M.B.A
    Partner and Co-Founder, Cardinal Partners
  • John Maeda, Ph.D., M.B.A.
    President, Rhode Island School of Design
  • Omid Moghadam, M.S., M.B.A.,
    Member of Staff, The Harvard Medical School Center for Biomedical Informatics
  • Paul C. Tang, M.D. , M.S. (Chair)
    Internist, Vice President, and Chief Medical Information Officer, Palo Alto Medical Foundation

* In her role, Ms. Susannah Fox will be advising the program and the Foundation on overall strategy but will not review proposals or make award recommendations.

About the Robert Wood Johnson Foundation and the Pioneer Portfolio
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. The Foundation's Pioneer Portfolio supports innovative ideas and projects that may lead to important breakthroughs in health and health care. Projects in the Pioneer Portfolio are future-oriented and look beyond conventional thinking to explore solutions at the cutting edge of health and health care. 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 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.