The Robert Wood Johnson Foundation is launching what it calls Data for Health, a project that will explore how big data from a variety of sources well beyond healthcare can be used to inform consumers and help them live more healthful lives.
The confluence of major investments in the promise of big data from health IT – from EHRs to labs to claims information – and an “explosion of apps and devices that track fitness, mood and sleep” prompted the foundation to embark on the initiative. But it’s not just health data that will be put to use.
“Technologies that passively capture information as people communicate with one another on social networks, shop, work, or do any number of activities that leave ‘digital footprints,’ are creating new forms of data relevant to health,” the foundation said in announcing the effort.
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The effort will be led by an advisory committee co-chaired by David Ross, director of the Public Health Informatics Institute, and Dr. Ivor Horn, medical director of the Center for Diversity and Health Equity at Seattle Children’s Hospital.
Combing health data with the social data in a secure fashion has great potential to help both individuals and healthcare providers come up with better public health solutions, the foundation said, adding that the overarching theme is to create a “Culture of Health” throughout the country.
That’s a tall order, but the foundation is pinning its hopes on the fast-moving world of big data.
“There are many important parts of that enormous and ambitious effort,” Dr. Michael Painter, senior program officer at the foundation, told MedCity News in an email. “One important building block, though, is timely, ready access to information that people need to make informed health decisions. Our technology is helping us all create data in almost all aspects of our lives—in everything we do. If we could access that information when we need it, it could be enormously helpful.”
Despite such promise, practical matters around data sharing persist, especially considering the scope goes well beyond healthcare data, which itself is challenging enough. Interoperability among health information exchanges remains exceedingly difficult given the patchwork of state and federal laws on privacy and data sharing.
“Unfortunately, our nation does not yet have a way to organize these data from all aspects of our lives, including healthcare,” Dr. Painter said. “Our leaders are talking about ways to build such an information system. RWJF wants to know what people think about these kinds of information systems. What would they like them to do? What do they hope they will be like? What worries them about these plans?
“The obstacles that are keeping us from having such a data resource are many,” Dr. Painter added.”They include technical obstacles – how would we actually organize the data, encrypt it, move it, get to it. But it also includes legal, cultural, political and other considerations—these other considerations may be significantly more formidable than the technical.”
In an attempt to gauge the population’s attitudes on sharing such data, and how it might be applied, the advisory committee will host a series of forums, dubbed ‘Learning What Works,’ across five cities to hear from citizens and professionals alike. The cities are Philadelphia, Phoenix, Des Moines, San Francisco and Charleston, South Carolina.
The advisory committee will issue a report and recommendations in early 2015. The Office of the National Coordinator for Health Information Technology will participate in each of the listening sessions.
“Community developers, doctors, school districts, public health departments, consumers, and local businesses all need data for building and sustaining healthy communities,” said Ross. “Finding out what problems people want to solve and what health information they need to help solve these problems will help us better understand how to design the infrastructure for collecting, sharing, and protecting data in ways that work best for communities across the country.”
The Data for Health advisory committee is comprised of public health practitioners, physicians, health care researchers, health technology and informatics experts, consumers and representatives of local government and health care systems.
