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Susannah Fox

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Susannah Fox

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

Stress: the New Normal for Cancer Patients?–Susannah Fox

May 2, 2009 By Susannah Fox 4 Comments

Deborah Bell is actively involved in cancer advocacy and manages several online communities for cancer patients, their families, and their friends, having been an ACOR listowner for 11 years, and a listmember for 13. She contributed the following essay: I know a 15-year breast cancer survivor who was just diagnosed with a recurrence in the […]

Filed Under: e-patient stories Tagged With: 11 Years, ACOR, breast cancer, Breast Cancer Survivor, Cancer Advocacy, Cancer Patients, Cancer Survivors, Chemo, Daycare, Deborah Bell, Life In The Usa, Lumpectomy, Major Illness, Mastectomy, Recurrence, Recurrences, Respite, State Of Affairs, stress, Stressor, Stressors, Way Of Life

Mobile could be a game-changer – but only for those who get in the game.–Susannah Fox

April 23, 2009 By Susannah Fox 10 Comments

Original title: Health 2.0 meets Ix: Susannah Fox’s presentation Here are my prepared remarks for the “Navigating the New Health Care Delivery System” segment at the Health 2.0 meets Ix conference (with the lines I added to respond to other themes brought out during the conference in bold) “Is Health IT the answer? Only if […]

Filed Under: trends & principles Tagged With: california healthcare foundation, health 2.0, information therapy, mobile, participatory medicine, pew internet project

Participatory Democracy, Participatory Medicine–Susannah Fox

April 17, 2009 By Susannah Fox Leave a Comment

A sneak preview of my remarks at the “Health 2.0 meets Information Therapy” conference appears on the IxCenterBlog: Participatory Democracy, Participatory Medicine. A good discussion of the issues has already begun there and on The Health Care Blog.

Filed Under: found on the net Tagged With: Boston, information therapy, Participatory Democracy, participatory medicine

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