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Susannah Fox

I help people navigate health and technology.

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Health Data Rights

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

The Value of Data

April 15, 2015 By Susannah Fox 9 Comments

Patient Records by ken fager on flickr

Health care is in danger of missing the point. (A repost from 2014 that’s relevant today thanks to announcements at HIMSS.) In 1999, when I was the editor of USNews.com, the dot-com boom was in full swing. Money seemed to be gushing out of the Bay Area and some sharpies at U.S.News saw an opportunity […]

Filed Under: hc's problem list, health data, medical records, trends & principles Tagged With: big data, E-Patient Dave, Health Data, Health Data Rights, Health Datapalooza, John Halamka, Paul Levy, SMARTHealthIT

Data for health

November 4, 2014 By Susannah Fox Leave a Comment

Last week I was part of the first community meeting for Data for Health, a program sponsored by the Robert Wood Johnson Foundation. It was held in Philadelphia on October 30 (an absolutely beautiful fall day). You can catch up on the #data4health tweets thanks to Symplur — and there were some good ones: Some themes of #Data4Health: […]

Filed Under: health data, policy issues, trends & principles Tagged With: #data4health, Health Data, Health Data Rights, Office of the National Coordinator for Health Information Technology, Robert Wood Johnson Foundation, self-tracking, Tracking for Health

Participatory Medicine at PdF09: Can we get a do-over?

July 8, 2009 By Susannah Fox 12 Comments

Detail of a painting by Regina Holliday shows a hand holding a smartphone with the PatientsLikeMe symbol

The poli-tech tribe gathered in New York last week for the Personal Democracy Forum and, as Craig Newmark put it, welcomed “our new nerd overlords.” Esther Dyson, Jamie Heywood, Rep. Jerry Nadler (D-NY), and I were asked to take on a breakout panel entitled, “From Participatory Politics to Participatory Medicine: The Coming Revolution in Health […]

Filed Under: reforming hc, trends & principles Tagged With: Chris Schroeder, Craig Newmark, Disaggregation, Esther Dyson, Health Care Policy, Health Care Reform, Health Data Rights, Healthcentral, Jamie Heywood, Jerry Nadler, Openness, participatory medicine, Patient Data, patientslikeme, Personal Democracy Forum, pew internet project, susannah fox, Ted Eytan, Transparency

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Recent Comments

  • Susannah Fox on Public Q&A: “I received scary test results. What questions should I ask my clinician?”: “Thanks, Samantha! I love your signature line/bona fides list — you tick the boxes for “learned and loved experience” described…” May 6, 15:33
  • Samantha Bridge on Public Q&A: “I received scary test results. What questions should I ask my clinician?”: “Great conversation. It has been my experience as a nurse to have the conversation before the testing. What is the…” May 4, 09:05
  • Susannah Fox on Rare Disease in the NYT: “Captivated is such a good description of how I felt, too. I read the essay once through quickly, then a…” Apr 25, 11:12

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