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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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Recent Comments

  • James on Wow! How? Obesity Treatment: “Inspiring read! Ilant Health’s holistic, shame-free approach to obesity care is exactly what’s needed to address a complex condition with…” Sep 30, 01:23
  • Susannah Fox on Caregiving in America: “I hear you, Mickey! You likely already know about Caring Across Generations and other organizations that have tried to move…” Sep 25, 14:51
  • Mickey Alderman on Caregiving in America: “Interesting information. Being unpaid is a huge issue that has been ongoing for decades. The question we keep asking is…” Sep 25, 10:42

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