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Susannah Fox

I help people navigate health and technology.

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Clinical Trial Data

Why should anyone care about health data interoperability?

September 16, 2019 By Susannah Fox 6 Comments

Medical records closes at 5pm on Friday by Regina Holliday

A question I hear quite often, sometimes whispered, is: Why should anyone care about health data interoperability? It sounds pretty technical and boring. If I’m talking with a “civilian” (in my world, someone not obsessed with health care and technology) I point out that interoperable health data can help people care for themselves and their families […]

Filed Under: health data Tagged With: Amazon, Clinical Trial Data, FHIR, Health Data Rights, Hugo Campos, medical devices

Why people participate in clinical trials: altruism and access

October 30, 2017 By Susannah Fox 3 Comments

Painting of a red landscape with people climbing a dark arrow toward the sky

I’m honoring the contributions of my community colleagues over the years by pulling out some of their best comments and quotes.  Rahlyn Gossen, in response to Peer-to-peer healthcare: Crazy, crazy, crazy, obvious (2011):  By far the biggest hurdle to clinical trials recruitment is awareness. The public is generally not aware and doctors are not informing […]

Filed Under: featured commenters Tagged With: altruism, Clinical Trial Data, Clinical Trials, EHR, Regina Holliday

Clinical Trial Data Rights?

October 29, 2009 By Susannah Fox 3 Comments

“If you expose human beings to an experimental treatment, the public has a fundamental right to see the results of those experiments.” – Steven Nissen, chairman of the cardiology department at the Cleveland Clinic, quoted in The Sunlight Foundation’s account of Bray Patrick-Lake, an e-patient who was left with only questions after a clinical trial […]

Filed Under: found on the net Tagged With: Cardiology Department, Cleveland Clinic, Clinical Trial Data, Experimental Treatment, Fundamental Right, Human Beings, Patrick Lake, Steven Nissen, Sunlight Foundation

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  • Cam Teems on Seekers go out on the hunt: “Susannah – First, as a seeker on behalf of my child, I had to gird my loins and know I…” May 19, 16:56
  • Susannah Fox on Caregiving is not a “career break”: “Thanks for the tip, Diane. Is this the article you read? Family Caregiving: A View From the Inside https://www.aarp.org/caregiving/home-care/info-2022/history-of-family-caregiving.html I…” May 9, 08:59
  • Diane on Caregiving is not a “career break”: “Susannah, Did you see the article in AARP Bulletin (nowadays my favorite magazine) about the crisis in caregiving? Lots of…” May 9, 01:10

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  • Seekers go out on the hunt
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