My dad was a survivor — of a heart attack in his 50s, kidney cancer in his 60s, and an initial diagnosis of melanoma in his 70s. Melanoma recurrence and complications of treatment are what finally got him. A lifelong runner, Dad kept meticulous notes about his mileage and heart rate on paper. He bought […]
health data
Cheese, whisky, and health data
Here’s how I’ve been talking about health data interoperability recently, with an appeal to people’s patriotism (and their appetites): At the start of the video, I thank Mona Siddiqui, MD, for her service as the Chief Data Officer at the U.S. Department of Health and Human Services. To learn more about her portfolio, check out […]
Why should anyone care about health data interoperability?
A question I hear quite often, sometimes whispered, is: Why should anyone care about health data interoperability? It sounds pretty technical and boring. If I’m talking with a “civilian” (in my world, someone not obsessed with health care and technology) I point out that interoperable health data can help people care for themselves and their families […]
A Matter of Trust, Perception, Risk, and Uncertainty
The Big Issues Raised by the Acquisition of PatientsLikeMe and Other Patient Data Transactions By Susannah Fox, Jane Sarasohn-Kahn and Lisa Suennen I’ve lived long enough to have learned The closer you get to the fire the more you get burned But that won’t happen to us Cause it’s always been a matter of trust -A […]
Mapping the health data landscape
I think our understanding of the current health data landscape is about as accurate as a map of the world in the 15th century: excruciatingly detailed in the areas we know well, but hilariously, woefully — even dangerously — incomplete when it comes to the areas of health and health care that lie beyond our […]
Trust gap: Health apps and data sharing
There has been a steady drip-drip-drip of articles documenting how health apps are sharing data with third parties: Data sharing practices of medicines related apps and the mobile ecosystem: traffic, content, and network analysis, by Grundy et al. (British Medical Journal, Feb. 25, 2019) You Give Apps Sensitive Personal Information. Then They Tell Facebook. Wall […]
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