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Susannah Fox

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policy issues

The Decision Tree: How Better Health Can Scale

May 1, 2010 By Susannah Fox 3 Comments

“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 […]

Filed Under: health data, patient networks, policy issues, positive patterns Tagged With: 23andme, chronic disease, CureTogether, Decision Tree, digital divide, Genetics, getupandmove, Health Data, Hipaa, patientslikeme, Pew Research Center, susannah fox, Thomas Goetz

Health data rights on CNN

January 14, 2010 By Susannah Fox 1 Comment

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.

Filed Under: health data, policy issues Tagged With: Caption, Cnn, Dave Alan, Elizabeth Cohen, Health Data, Holliday, Mccabe, Medical Correspondent, Regina, Star Team, Zeitgeist

Tell the FDA the whole story, please

November 8, 2009 By Susannah Fox 26 Comments

Exterior of the National Museum of American History in Washington, DC, with the Washington Monument in the background

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 […]

Filed Under: policy issues Tagged With: Amia, Ammo, Ammunition, Amp, Aspx, Boundaries, Consumer Information, Fingers, health care, health information, Health Research, Health Search, Health Seekers, Health Websites, Healthypeople, Hhs, Information Quality, Information Retrieval, Internet Data, Internet Health Report, Jonathan, Jonathan Richman, Medical Advice, Medical Information, Medical Library Association, Menus, Mla, Mole, Pew Internet, Pew Research Center, Quality Game, Quality Indicators, Research Question, Respondents, Salmon, Short Answer, Social Impact Of The Internet, Thre, Three Quarters, Timeliness, Vital Decisions, Watchdog, Www Health

“HIPAA is SO 1996″

September 25, 2009 By Susannah Fox 3 Comments

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 […]

Filed Under: hc's problem list, medical records, policy issues Tagged With: Architectural Designs, Assumptions, Cell Phones, Debates, Decisions, Diana Forsythe, Hipaa, Infrastructure Design, innovation, Latanya Sweeney, Liquidity, National Infrastructure, Palo Alto Medical Foundation, Panelists, Patient Privacy, Paul Tang, Point Of View, Policy Committee, Policy Discussions, Testimony, Vice Chair

Health IT Policy: E-patients want access

September 17, 2009 By Susannah Fox 10 Comments

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.

Filed Under: health data, medical records, policy issues, reforming hc Tagged With: American Adults, American Association Of Retired Persons, Choice Control, Data Stewardship, Doct, Early Days Of The Internet, Health Care Decisions, Health Data, Health Information Infrastructure, Health Information Technology, Internet Adoption, Internet Health Care, National Coordinator, National Health Information, New Tools, Patient Choice, Patient Privacy, Patient Privacy Rights, pew internet project, Regenstrief Institute, Social Impact Of The Internet

HIPAA’s Broken Promise

September 14, 2009 By Susannah Fox 6 Comments

Large house built directly on sand, now collapsing

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 […]

Filed Under: health data, policy issues Tagged With: Anonymization, Computer Scientists, data, Fellow Patients, Fig Leaf, Free Flow, Glass Houses, Health Data, Health Information Technology, Health Professionals, Hipaa, Information Privacy, Medical Researchers, Medical Secrets, Ohm, Paul Ohm, Privacy Problem, Unicorns

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