“The internet was created to connect people and groups. The first step is to share stories. The next step is to share quantitative observations.” “Health care has been locked up in regulatory amber. HIPAA was passed in 1996, almost perfectly timed to cut off health care from the internet. But there is a loophole: to […]
policy issues
Health data rights on CNN
Elizabeth Cohen, CNN Senior Medical Correspondent, captured the zeitgeist of the health data rights movement in today’s must-read article, Patients demand: ‘Give us our damned data’. An e-patients all-star team is quoted in the story: Jen McCabe, Regina Holliday, e-Patient Dave, Alan Viars.
Tell the FDA the whole story, please
I scan menus for keywords (fig, parsnips, salmon…) and it turns out I scan Twitter the same way, looking for anyone who is talking about my favorite topics (data, consumers, information quality…) So when I saw Jonathan Richman‘s tweet the other night, I couldn’t resist it: Anyone ever seen data on the overall accuracy of […]
“HIPAA is SO 1996″
That’s a direct quote from Paul Tang, of the Palo Alto Medical Foundation, at last week’s meeting of the Health IT Policy committee, of which he is vice chair. Dr. Tang was riffing on an e-Patient Dave quote, which I read during my testimony: I want innovation at a rate that resembles the rate of […]
Health IT Policy: E-patients want access
What would you say to policymakers who are discussing the implementation of a national health information infrastructure? Here’s what I’d say: E-patients want access to tools and information. Many will find what they need, many will not. You can help.
HIPAA’s Broken Promise
If you hate HIPAA, it’s your lucky day. Paul Ohm is handing you ammunition in his article, “Broken Promises of Privacy: Responding to the Surprising Failure of Anonymization.” His argument: our current information privacy structure is a house built on sand. “Computer scientists…have demonstrated they can often ‘reidentify’ or ‘deanonymize’ individuals hidden in anonymized data […]
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