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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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