digital health

Six Flavors of Data Sharing at the Inaugural StrataRx Part II

The previous post describes the first three “ flavors” of data sharing. Here are three more “flavors” of data sharing as explicated at StrataRx.

      4.      Anne Wojcicki shares genetic data with an open API at 23andme

Anne Wojcicki, the founder of 23andme received applause when she announced the world’s first open API for genetic data to accelerate their research activities.

Her Strata talk, “Crowd Sourced Research, Better Faster and Cheaper” describes her goal to let individuals be participants in research and enable people to come together so research can be as simple as a data query. With 1 Million data points from customers each week via voluntary surveys, 23andme has established the first large data set of 9,000 Parkinson’s patients.

      5.      The Government opens a variety of data streams

Niall Brennan’s, talk “Unleashing the Power of Medicare Data to Accelerate Health System Change” highlighted the government’s commitment to data-sharing, including:

·        Medicare data sharing – release Medicare data to qualified entities so that they can combine with other data sources and make the whole data public

·        Blue Button: the VA’s easy way to download your PHR

·        Health indicators warehouse-by topic, geography and initiative with apis

·        Health data.gov 300 data sets and open APIs

·        Health Datapalooza – events to build the health care ecosystem

      6.    Tim O’Reilly wants data sharing to improve process, workflow and service in healthcare

For those of us thinking about clinical adaption rates, Tim O’Reilly, known as a savvy predictor of tech trends, gave us an interesting historical Silicon Valley perspective in his StrataRx talk, “Solving the Wanamaker Problem”  (department store magnate John Wanamaker famously said, “I know that half of my advertising doesn’t work. The problem is that I don’t know which half.”)

Overall, Tim believes that there is an opportunity to reinvent healthcare using data to improve process, workflow and service:

·        Platforms are a key component to open data- just as a smart phone is more useful with lots of apps, so healthcare needs an open data platform

·        Quantified Self–as a group of innovators having fun–represents the beginning of a bigger trend, like the first people who built computers in their garage, founding the PC industry

·        Large-scale social experiments, where sharing can make a difference in health care – sites like patients like me and 23 and me are just the beginning

·        Closing the loop with data is important to payment reform and improving clinical outcomes

A long-time proponent of open source-he was  organizer of the summit meeting that gave the open source software movement its name-Tim also offered the participants an opportunity to sign a petition to harmonize federal law with state law so that it is possible for individuals to get their own lab results in a timely manner direct from the laboratory.

On a broader note of data sharing, he closed his talk with a call to action suggesting that the audience of data folks help “spur the revolution in healthcare.”

Noticing that medical device data was not included in these discussions, left me wondering how we can broaden the participant list and “share” these first “flavors” of data.

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