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 […]
policy issues
The P stands for portability
One of my core beliefs is that we need to open up access to the data, information, and tools people need to solve their own problems in health care — or at least give people the chance to direct their data to experts who can help them. I recently had the chance to be part […]
Peer support for when the system fails
What do you do when you know something is wrong but you can’t find anyone to confirm your suspicions? Or when you finally identify the culprit but find out that other people are being kept in the dark? These days it’s likely that you go online and if you are lucky — or determined — […]
Data as an engine of disruption in health care
Continuing my practice of “flipping” an event — posting what I hope to get across in advance in order to jump start the conversation — here is a preview for a panel set to take place on Oct. 23. My co-panelists (Iya Khalil, Deborah Kilpatrick, and Don Rucker) and I will talk about data as an engine […]
Blue Button’s North Star
Blue Button is a Trojan horse for culture change in the American health care system. It places power in the hands of patients and whets the data appetites of millions of Americans and the companies who would like to serve them. If you’ve never heard of Blue Button, here’s a quick overview: The federal government […]
The Rise of the New Bio-citizen
Over the next two days, I’ll be part of a group convened by Eleonore Pauwels and Todd Kuiken to discuss barriers to citizen-driven biomedical research. If you are intrigued, read the report, “The Rise of the New Bio-citizen,” which lays out how people “are pursuing a range of activities from analyses of genomic data for […]
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