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Susannah Fox

I help people navigate health and technology.

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Superheroes and rock stars at the Institute of Medicine

October 14, 2009 By Susannah Fox 7 Comments

Update: National Cancer Policy Forum published a book based on the workshop, A Foundation for Evidence-Based Practice: A Rapid Learning System for Cancer Care, which you can buy, read online for free, or download as a PDF. The discussion portion of this panel was captured in a short video. ___________________ The Institute of Medicine’s recent […]

Filed Under: key people, Why PM Tagged With: ACOR, Amy Abernethy, Annals Of Internal Medicine, Carolyn Clancy, Chordoma, Clinical Trials, Dartmouth, Emory, Gilles Frydman, Institute Of Medicine, Jamie Heywood, learning health system, Lynn Etheredge, Oncology, Paul Wallace, Transparency, Vanderbilt, Youtube

Participation Matters–Susannah Fox

October 2, 2009 By Susannah Fox 6 Comments

In politics and in health care, participation matters as much as access. The passion we saw in the political campaigns last year is matched by the passion we see when someone is trying to save a life, find a better treatment, or just manage the health of a loved one. What are you doing in […]

Filed Under: Why PM Tagged With: American Adults, Benchmark, chronic disease, Definition Of The Internet, digital divide, disability, health care, health information, Internet Connections, Internet User, Internet Users, Internet Wirelessly, Laptop Cell Phone, Medical Advice, Mobile Access, Mobile Adoption, Participation, participatory medicine, Passion, pew internet project, Political Campaigns, Voices

“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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