Data for Health: building a culture of health through information
This fall, I’m co-chairing Data for Health, an initiative by the Robert Wood Johnson Foundation that seeks to explore how information and data on health can be harnessed to help people lead healthier lives and how data can inform actions that lead to healthier communities. Data for Health is hosting a series of events around the country to hear from planning and development, public health departments, school districts, health care, and businesses about what information is important to them and how it might help people lead healthier lives. Along with co-chair Ivor Horn, MD, MPH and several of our advisory committee members, I’ve had the opportunity to hear from community members in PhiladelphiaPhoenix and Des Moines.

In each city, we’re asking questions like, “What data do you wish you had to create a substantially healthier community?” While each community faces its own local issues, I’ve noticed several common themes.

My welcome presentation at the Des Moines, Iowa stop of the Data for Health tour
  • Data flow has to have a bidirectional value proposition—which means those who contribute data receive some form of valuable information in return. Absent a clear and mutually agreed upon value proposition in advance, data exchange and data use projects will fail. The Data for Health discussions have emphasized the importance of asking individuals and the communities they represent what constitutes value in data.
  • The data we collect should inform action. The discussions in each city tell us that community leaders and citizens want to understand how their health data leads to health impact. They want to see a clear line of sight between their data and how it will inform actions that matter. In my opinion, we also need to develop metrics that will demonstrate that the investment in data yields policy changes that have impacted health. These metrics need to be shared across many communities in ways that help us learn which interventions or approaches work to improve health of individuals and communities.
  • Generational differences point to a new way of using data. Some younger attendees spoke about using Fitbit information for themselves, but also wanting to share it on social media with friends, as a way of reinforcing healthy behavior. I heard from older attendees that they are willing to share their personal health information with their primary care physician, but have serious doubts about sharing beyond their doctor. How we view our personally identified health information seems to be changing across our society when viewed through the lens of age strata.

The Data for Health events continue in December, with stops in San Francisco and Charleston. The Data for Health advisory committee will be issuing a report and recommendations in early 2015, based on all these events. I look forward to learning more about what information can help people lead healthier lives and improve health in their communities.