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Susannah Fox

I help people navigate health and technology.

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Health Data

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

Participatory medicine and health data rights on NPR

November 16, 2009 By Susannah Fox 10 Comments

NPR’s Morning Edition story, “Patients Turn to Online Buddies for Help Healing,” combined research and real-life examples, participatory medicine and health data rights. Much of what I said during my interview with Joseph Shapiro is based on what I’ve written and read here on e-patients.net, so, first, thank you. I’ve already started answering questions on […]

Filed Under: general, health data Tagged With: Answering Questions, Assertions, Buddies, Case Mix, Collective Decisions, Health Care Decisions, Health Care Revolution, Health Data, health information, Health Professionals, Health Searches, Health Systems, John Horrigan, Joseph Shapiro, Medicine, Medicine And Health, Mediums, npr, Offline Sources, Pareto Principle, Partnership, Person Accounts, Pew Research Center, Real Health, Tom Ferguson, Twitter, Walks Of Life

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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