Imagining the Future of Health Data

Mar 23, 2015, 3:15 PM, Posted by Susannah Fox

The possibilities to use data for health feel endless when you allow communities to dream out loud. Those dreams may soon become reality with upcoming recommendations from the Data4Health Advisory Committee.

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I have found that the only way to understand an emerging field is to listen, to set aside assumptions, and to let people’s own hopes and fears guide the discussion. That is the genius of the Data4Health project, which recently completed a five-city listening tour and returned with a set of insights that will benefit everyone who cares about the future of health and health care.

On April 2nd, during an event in Washington, D.C., the Data4Health Advisory Committee will release a report based on these insights with a set of comprehensive recommendations for how data can be collected, shared, protected and translated in ways that benefit individuals and communities.

My favorite quote in the report captures the importance of staying humble in the face of all that we do not know:

The complexities of people’s lives don’t always fit well in a drop down box.

We can make educated guesses about people’s interests in collecting and sharing health data, but until we give them a chance to dream out loud, we don’t know what is possible.

For example one listening session participant talked about how, if given the chance, families might be willing to track a child’s asthma attacks if they know that the data will be used to inform their wider communities about the effects of air quality.

Or what if physical activity patterns could be used to not only track individuals’ cardiac health but also to inform decisions about where to place a public park, where it is needed most?

We know that younger adults are more likely than older ones to embrace digital technology, but that does not necessarily mean that older adults are less likely to track their health. In fact, people ages 65 and older are the most likely group to track some aspect of their health. They just use offline tools to do so instead of an app, like a journal or a notebook.

And even that could change if digital tools become as easy to use as paper and pencil.  And we learned on the listening tour that the more adept people become with digital technologies; the more likely they are to find value in sharing their health information digitally.

Follow the conversation on twitter at #Data4Health.

One indication of people’s enthusiasm for health data was revealed when, in the first 5 days after Apple announced its new ResearchKit initiative, an opensource software framework that matches researchers to personal health data through apps, over 41,000 people registered to be part of the first five studies, which cover asthma, diabetes, breast cancer, Parkinson’s, and heart disease. Prior to that, researchers had only been able to recruit a few hundred participants for each study.

During the April 2nd release event, Stephen Friend, co-founder of Sage Bionetworks, a nonprofit research institution that created two of the apps for ResearchKit, will speak to how Apple’s initiative can revolutionize medical studies and lead to a better understanding for how to prevent and treat diseases.

That’s the imagined, possible future that Data4Health can bring—wider participation in building a Culture of Health—if we can keep listening and learning from people.

Follow the conversation on twitter at #Data4Health.

View a video of the live conversation at the release event for the Data4Health report: