UCSF Breast Cancer Center Chosen to Design and Test Innovative, Consumer-Centered Personal Health Record

The Carol Franc Buck Breast Care Center at the University of California, San Francisco (UCSF) will play a key role in a program to help consumers use information technology to better manage their health and navigate the health care system. Funding for the $300,000 UCSF project will come from the California HealthCare Foundation (CHCF).

Under the direction of Laura Esserman, M.D., M.B.A., the UCSF team, one of nine chosen from a pool of more than 165 applicants by the Robert Wood Johnson Foundation, will design an application that builds a customized care plan for patients diagnosed with breast cancer.

The UCSF team and the other eight teams will work collaboratively to design and test a suite of personal health record (PHR) applications that can be built upon a common platform to help people better meet their health care needs in an integrated fashion. Such tools may remind a patient to take medications, provide tailored decision prompts to help people understand and adhere to treatment regimens for specific conditions or pain therapy, or transmit data to providers.

“PHR tools offer round-the-clock access to personal health information and decision support tools, so patients can better manage their health and the care they receive,” said Veenu Aulakh, M.P.H., senior program officer at CHCF. “Knowing more about disease specifics, which treatment they are getting and why, and next steps in the treatment plan, helps patients feel more engaged and can result in better care coordination, a central challenge with our health care system.”

A recent survey commissioned by the Markle Foundation found that Americans overwhelmingly want to have electronic copies of their medical records and believe that having greater access to their own health information will reduce medical mistakes and costly repeat procedures. At the same time, many of the survey respondents expressed serious concerns about the privacy and security of their health information.

Harnessing the Power of Personal Health Records

The Robert Wood Johnson Foundation (RWJF) is the primary sponsor of Project HealthDesign: Rethinking the Power and Potential of Personal Health Records, a $4.4 million initiative to design and test new tools that advance the field of PHR systems over 18 months. CHCF had earlier contributed $600,000 to help launch the RWJF initiative.

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.

More information about Project HealthDesign, including a list of the other program grantees, is available at www.projecthealthdesign.org.

About the Carol Franc Buck Breast Care Center

The Carol Franc Buck Breast Care Center at the UCSF Comprehensive Cancer Center is specifically designed to meet the needs of patients with breast problems, breast cancer, or general concerns about breast health. A multidisciplinary team of surgeons, oncologists, radiologists, psychologists, nutritionists, and pathologists works with patients individually to help coordinate care to ensure that each patient’s concerns are thoroughly addressed. Their mission is to develop an innovative setting that will ensure that patients’ sense of comfort and participation are central in delivering the best care possible.

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 30 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. By helping Americans lead healthier lives and get the care they need, the Foundation expects to make a difference in your lifetime.

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About the California Health Care Foundation

The California Health Care Foundation is dedicated to advancing meaningful, measurable improvements in the way the health care delivery system provides care to the people of California, particularly those with low incomes and those whose needs are not well served by the status quo. We work to ensure that people have access to the care they need, when they need it, at a price they can afford.