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Susannah Fox

I help people navigate health and technology.

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Shared Kismet: Wikipedia and the NIH

July 16, 2009 By Susannah Fox 14 Comments

The National Institutes of Health hosted a Wikipedia Academy today to train scientists, communications staff, and other NIH staffers in how to contribute to what has become a top source for health information in the U.S. (For more details, please see the NIH press release, a Wikipedia project page, and a Wikimedia Blog post.) The […]

Filed Under: positive patterns Tagged With: National Institutes Of Health, NIH, Twitter, Wikimedia Foundation, Wikipedia

E-patients in U.S. News–Susannah Fox

July 14, 2009 By Susannah Fox Leave a Comment

U.S. News & World Report’s Best Hospitals guide features 3 articles of particular interest to e-patients: Getting Medical Advice on the Web from Other Patients Would You Share Your Health Information Online? Great Medicine Needs Committed Patients

Filed Under: found on the net Tagged With: Best Hospitals, health information, Medical Advice On The Web, U S News

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

The Social Life of Health Information–Susannah Fox

June 10, 2009 By Susannah Fox 10 Comments

The Pew Internet/California HealthCare Foundation report, The Social Life of Health Information, is packed with new findings from a survey of 2,253 adults, including 502 cell-phone interviews, conducted in either English or Spanish. We spent a bundle of money on making this a random sample of the U.S. population, but guess who got a call […]

Filed Under: demographics, trends & principles Tagged With: California Healthcare, california healthcare foundation, Cheat Sheet, Comfort Food, E-Patient Dave, Foundation Report, Hat Tip, Health Info, health information, Healthcare Report, Information Gathering, information therapy, Interview In The Mix, Interviewer, John Seely Brown, Medical Issues, Mobile Internet, Paul Duguid, Pew Internet, Phone Interviews, Random Sample, Survey Questions, Tom Ferguson

Open Access to Publicly-Funded Research: Let Them Eat Cake?

May 5, 2009 By Susannah Fox 28 Comments

Update on 12/3/14: Nature re-ignited the access debate when they announced that they will make all their articles “free to view” (but if you read the fine print: it makes the “dark social” practice of #icanhazpdf and other access work-arounds illegal). To catch up, see my Storify: Five-alarm fire in Open Access Land.  Marketplace aired […]

Filed Under: policy issues Tagged With: journal, Marketplace, Open Access

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  • 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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