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 […]
health data
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 […]
Art and data
Jacqueline von Edelberg created a striking installation on the lawn of the U.S. Capitol on Monday, March 25. Each strip of cloth represents one child killed by a gun in the U.S. since the Sandy Hook massacre in 2012, 13,000 in all. The installation served as a backdrop for a rally commemorating the one year […]
Health Datapalooza X
This week is the 10th anniversary Health Datapalooza. It’s a milestone worth celebrating. In 2010, I attended what was then called the Community Health Data Forum at the Institute of Medicine. I posted a preview: Making Health Data Sing (Even If It’s a Familiar Song) and below are my notes from what we knew even […]
A taxonomy of health data
How do you define “health data”? To borrow a phrase from Daniel Solove, it is a concept in disarray and in need of a taxonomy. Here are the items that fall naturally into the health data basket: electronic health record data current or past health and disability status, including mental and physical well-being medication lists […]
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