Stephen Downs has an enviable job, to fund prophets — and yes, that’s “prophets” with a ph, not an f. That’s because, as a grant-giver for the Robert Wood Johnson Foundation on College Road, he can allocate millions of dollars to develop innovative ways to improve the nation’s healthcare, and he never has to worry about the bottom line.
“We are looking to the challenges and opportunities of tomorrow,” says Downs in a telephone interview. “When you look at the aging population, the shortage of healthcare professionals, and the political trends, you reach the inescapable conclusion that people will need to be much more engaged in their own healthcare. If so, what will be needed to help people fill that responsibility?”
As deputy director of RWJF’s health group, Downs works with the Project HealthDesign portfolio. Earlier this year RJWF and the California Health Foundation gave out $4.4 million for nine pioneering studies on “rethinking the power and potential of personal health records (PHRs).” Though that’s just one percent of the largess that RWJF distributes annually, any one of these studies could help transform doctor-patient relationships over the next several decades.
Hundreds of organizations are laying the groundwork to put personal health records online. The New York-based Markle Foundation, for instance, is trying to build a consensus about how to build the infrastructure, but Downs is thinking way beyond that. “There is a lot of energy and excitement about PHRs, but our sense was that prevailing visions were not ambitious enough,” he says. “Assuming that PHRs work, how do you use that information? We felt it was much more important to work on how people use the record to help manage their health.” For instance, a PHR might show what medications you are taking, but it could also have tools that help you to buy them at the cheapest prices and to remember to take them at the right times.
Patricia Brennan leads the PHR effort, which has the tagline, “rethinking the power and potential of personal health records.” “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 Brennan in a prepared statement. “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.” The grants:
A breast cancer center in San Francisco is designing a customized care plan so that patients can play a larger, more productive role in their care.
A University of Rochester team will design a tool for those diagnosed with heart failure and heart disease to self-manage their condition at home.
A diabetes center in Boston will work on a personal health application to integrate and analyze data. This information will be portable and available anywhere — at home or school, on the job, or in transit.
University of Washington researchers in Seattle will work on an application for overweight patients so that doctors can make at-home changes in drug therapy in between office visits. It could upload information on blood glucose, blood pressure, and exercise data. It could use cell phones to pictorially capture nutritional intake data and share it with providers in real-time.
A Vanderbilt University team will focus on one disease, cystic fibrosis, to design a child-focused personal medication management system that can communicate with children, schools, and caregivers. If the patient is a teenager, it will send just-in-time text messages.
A University of Massachusetts team will work to help caregivers manage chronic pain by linking a PDA (hand held device) to personal health records. These patients have complex medication regimens, challenging physical therapy protocols, and multiple appointments with providers, They maintain pain diaries and practice stress reduction techniques.
In Atlanta, Georgia, at the Research Triangle Institute, a PHR could help at-risk sedentary adults become more physically active. It could integrate data streaming from biomonitors with information from data systems maintained by health care providers.
Helping technology savvy adolescents take charge of their health care is the project for researchers in Pasadena, California.
University of Colorado researchers have been working on streamlining the paper health records for older adults with multiple chronic conditions, and they hope to come up with a PHR for this population.
Any of these exciting potential tools would work best on a universal platform, so Downs takes a rather jaundiced view of companies like Zweena, which put the PHRs on the web and then, from that platform, offers a set of tools. If everyone adopted a standard platform, says Downs, different tool-makers could peddle their wares.
“We take a somewhat contrarian view,” explains Downs, comparing the development of PHRs to the growth of AOL and the World Wide Web. AOL grew its customer base while the World Wide Web was still quite young. At that point, AOL put lots of tools into one package and tried to convince its clients that they didn’t need to go outside AOL. Now, of course, AOL users wouldn’t dream of staying confined within the AOL portal.
It will be the same for PHRs. Downs thinks a broader marketplace will, in the end, come up with better tools. “A good company with deep pockets can offer a good PHR product with tools tailored for the client, but in the open market, anyone could develop a tool for a particular need,” he says.
Downs grew up in New Hampshire, the son of a cultural anthropologist who did research all over the world. (His parents, Richard and Julie Downs, have moved to Stonebridge at Montgomery). He majored in physics at Yale, Class of 1986, and has a master’s degree in technology in public policy from MIT.
As director of the Technology Opportunities Program at the U.S. Department of Commerce, he promoted the use of digital network technologies to provide better education, health care, public safety and other social services. He has also been a research fellow in the office of disease prevention and health promotion in the U.S. Department of Health and Human Services. He and his wife, Janet Estes, live in Princeton and have two children.
Downs claims he is not a do-gooder, but ever since college he has wanted to apply technology to social good, and he attributes this to reading Schlesinger’s biography of Robert Kennedy: “I always wanted to use the skills and awareness I have for something important. I wake up every day being excited about it.”
The Robert Wood Johnson Foundation, College Road East, Box 2316, Princeton 08543-2316; 609-452-8701; fax, 609-627-6422. Risa Lavizza-Mourey MD, CEO. Home page: www.rwjf.org.