How Consumers Want to Use Data to Improve Health

The Robert Wood Johnson Foundation's advisory committee for the Data for Health initiative released its first report with insights, concerns, and ideas from the public about how to harness data to improve health.

The Robert Wood Johnson Foundation (RWJF)’s advisory committee for the Data for Health initiative released its first report with insights, concerns, and ideas from the public about how to harness data to improve health.

The information was gathered during “listening sessions” that took place in late 2014 in 5 cities across the United States: Charleston, South Carolina; Des Moines, Iowa; Philadelphia, Pennsylvania; Phoenix, Arizona; and San Francisco. Based on the information gathered at these sessions, the advisory committee presented its findings and recommendations in the Data for Health, Learning What Works report.

“The power of data is not the data itself: It is in how we use this information to address our country’s health problems,” Risa Lavizzo-Mourey, MD, MBA, RWJF president and chief executive officer, said in a statement. “The recommendations put forth by the Advisory Committee provide a blueprint for how we can effectively share data to help build a Culture of Health where everyone has the opportunity to live longer, healthier lives.”

During its listening sessions, the committee observed 5 significant themes: using data; exchanging data; protecting data; what individuals want and need; and what communities what and need.

“Ultimately, we need to develop a data infrastructure that is bi-directional, where communities can communicate what they want and receive something of value in return,” said Ivor Horn, MD, MPH, Advisory Committee co-chair and medical director of the Center for Diversity and Health Equity at Seattle Children’s Hospital. “The data and the technology to build this infrastructure exist. But first, we need to understand how communities are using and want to use the data, and establish trust for exchanging this information.”

The report does not address the technical challenges of using data from multiple sources, but does touch upon the “people-related” barriers and concerns. Participants in the listening sessions expressed a need for guidance and tools that link data to help them make health decisions. But the committee found that having the data does not mean individuals will work to make positive changes in health.

In addition, people continue to express concerns that their data will be used for helpful purposes and be protected against invasions of personal privacy and breaches in their personal information.

“Data moves at the speed of trust,” said David Ross, ScD, director of the Public Health Informatics Institute and co-chair of the Advisory Committee. “Those are the words we heard from people across the country. As a nation, we need to strike a balance between privacy and the free flow of information.”