Using data effectively to build a ‘Culture of Health’

Rapid advances in technology have enabled the collection of large amounts of data that could help society make better decisions about how to improve health. On a five-city listening tour to learn how to better use data to improve health, the Robert Wood Johnson Foundation stopped at San Francisco’s Mission Bay Conference Center, where it heard from government officials, consumer and privacy advocates and experts in health, technology, community development, etc.

Consumer Action’s Audrey Perrott attended the meeting, the fourth stop on the five-city tour, which also convened in Philadelphia, Phoenix, Des Moines and Charleston.

Dr. Ivor Braden Horn, medical director at the Center for Diversity and Health at Seattle Children’s Hospital, primed the discussion by relating how a close relative returned from active military duty suffering from an illness. Because data was shared on a regional level about others with the same syndrome, doctors were able to give the best care and treatment for her relative. Dr. Horn, a leading thinker on how social media and mobile health technology can be used to improve health outcomes in underserved populations, emphasized the importance of having the family of the patient advocate for the best care possible.

Andrew Rosenthal of Jawbone, a consumer technology and wearable device company that builds products and software powered by data science, was a speaker. Rosenthal said that data has proved useful to health researchers since the time of John Snow, the father of epidemiology who traced the outbreak of cholera in London in the 1850s using data he collected going door-to-door. Rosenthal discussed how tech companies and others are able to tell a lot more about consumers’ health since the invention of biometric activity trackers. Wearable activity trackers allow device owners to track body signs such as heart rate and to input information about sleep patterns, exercise patterns, caffeine consumption, calorie intake, etc.

Examples of using data to improve community health from the Robert Wood Johnson Foundation include:

• In Oregon, a city planner with access to information about traffic injuries and bike routes tracked by apps determined where to install bike lanes and other bicycle safety measures to improve safety and health.
• In Buffalo, NY, using data gathered from 911 calls, population density maps and other sources, city officials are able to pinpoint areas most in need of services and allocate and prioritize resources to these neighborhoods.

While everyone in the room seemed to agree that the right kind of data could be harnessed to improve health, there was disagreement on how much data should be collected and for what purposes. Concerns were raised about the accuracy and privacy implications of big data. While data use and collection is inevitable, attendees wondered about such perennial questions as “Who owns the data?” and “What impact does self-reporting of my health through social media, apps or peer-to-peer exchange have on my health or my privacy?” At the end of the day, listening-tour attendees agreed that data for health is important, but users need control over the information collected about them. Watch streaming video of the San Francisco event.

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