The report issued today by the influential Robert Wood Johnson Foundation (RWJF), ‘Data for Health: Learning What Works’ advocates a fresh approach to health data through greater education on the value/importance of sharing PHI, improved security and privacy safeguards and investing in community data infrastructure. If the above quote and the first two items sound contradictory, perhaps they are, but current ‘strict’ privacy regulations (that’s you, HIPAA), data siloing and the current state of the art in security aren’t stemming Hackermania (or sheer bad data hygiene and security procedures). Based on three key themes, the RWJF is recommending a suite of actions (see below) to build what they term a ‘Culture of Health. All of which, from the 10,000 foot view, seem achievable. The need–and importantly, the perception of need–to integrate the rising quantity of data from all these devices, pry it out of its silos (elaborated upon earlier this week in ‘Set that disease data free!), analyze it and make it meaningful plus shareable to people and their doctors/clinicians keeps building. (‘Meaningful’ here is not to be confused with the HITECH Act’s Meaningful Use.)
But who will take the lead? Who will do the work? Will the HIT structure, infrastructure and very importantly, the legal framework follow? We wonder if there is enough demand and bandwidth in the current challenged system. Release. RWJF ‘Data for Health’ page with links to study PDF, executive summary which adds details to the recommendations below, more.