Data for Health: recommendations for what works
I wrote earlier this year about the Data for Health listening tour, a Robert Wood Johnson Foundation-funded initiative that I co-chaired along with Dr. Ivor Horn. The tour took the advisory committee to five cities, where we entered into a dialogue with community health stakeholders, ranging from the founders of health-centric tech startups to community action nonprofit leaders and members of local government.
In the field of public health informatics, we talk and think at length about how data and health intersect, but on this tour, we moved beyond the theoretical. On this tour, we had the unique opportunity of listening to people who are tackling this intersection of health and data at all levels in cities across the nation. It’s tremendously eye-opening to start with the individual stories, to hear real-life use cases of challenges, barriers and successes that can inform our thinking and work.
Last week, the tour concluded with an event in Washington, D.C., where Ivor and I presented the final report (a collaboration between the advisory committee and Virginia Tech’s Social & Decision Analytics Lab) and discussed its recommendations. Our recommendations were drawn from the observations of the people we heard from across the country. We seriously considered their perspectives, taking note as we toured the five cities of the repetition of some key themes that we took under advisement as we drew up our recommendations. A comprehensive list of our recommendations is available in the report and in the Robert Wood Johnson Foundation’s recommendations summary sheet, but here in the blog, I’d like to highlight three themes I found particularly important to consider moving forward:
"What's in it for me?" We heard this question asked all over the country. People wanted to understand how data could empower their efforts as health stakeholders. We need to provide a value proposition to help people—from those providing the data to those analyzing and using the data—understand how data can support community health and why they should engage in data use. During this tour, we heard so many individual stories, both from Data for Health panelists, and from event attendees, about how data supported their own work. We need to share these stories and use them to spur even greater efforts in transforming health outcomes through data.
"Data moves at the speed of trust." By the end of the national tour, this phrase was everywhere. Many people are willing to share their data if they can understand how it will be used and how it will improve health outcomes. Sharing with others and learning from others is a compelling experience, but sharing your personal health data can feel very vulnerable—people don't want to send out their data into the ether. If they can feel confident that their privacy will be respected and their data will be used in meaningful, useful ways, they are much more likely to participate in research and fact-finding missions that ask for their health information.
Data are the atomic elements of information and can be a wonderful resource, but data need to be analyzed and made into meaningful information. Left as static data, this resource never turns into useful information. Those who are working in community health roles want to understand how to best leverage health data. They want the data to inform decisions. On our tour, we heard people in all fields (from social services to disease research) clamoring for tools that could help them. Providing those data use tools to health advocates at all levels is a crucial next step.
A video of the Washington, D.C., event, including the discussion of findings and recommendations as well as panelist presentations, is viewable here.