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Susannah Fox

I help people navigate health and technology.

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John Wilbanks

Public Q&A: Patient registries

March 9, 2020 By Susannah Fox 17 Comments

A community colleague asked for advice about how an organization can boost the signal for their patient registry. Recruitment levels are not what they expected and nowhere near what they need. I’m sharing what I wrote back so that others can chime in with their advice in the comments. First, look at what successful registries […]

Filed Under: health data, patient networks, public Q&A, research issues Tagged With: All of Us, cystic fibrosis, Erin Moore, ImproveCareNow, John Wilbanks, NIH, patient registries, Quality Improvement

“Privacy leaves the room when cancer enters.”

July 3, 2012 By Susannah Fox 1 Comment

– John Wilbanks talking about unintended consequences of informed consent. Read a summary of his talk and a clarification.

Filed Under: ethics, health data, policy issues, research issues Tagged With: John Wilbanks

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popular posts

  • Crazy, crazy, LongCovid, obvious
  • Sunflowers turn to each other for help
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Recent Comments

  • Susannah Fox on Crazy, crazy, LongCovid, obvious: ““I can tell you the names of all the women who reached out to respond.” That resonates. My own experience…” Jan 25, 13:11
  • Dee Sparacio on Crazy, crazy, LongCovid, obvious: “When I was first diagnosed in 2005 there was no online support for OC cancer patients/survivors except for ACOR. That…” Jan 25, 12:05
  • Helen Burstin on Crazy, crazy, LongCovid, obvious: “This is such an important post, Susannah. I’m very convinced that peer-to-peer healthcare is here to stay, but more work…” Jan 25, 11:34

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