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Susannah Fox

I help people navigate health and technology.

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ACOR

Privacy can kill, openness can heal–Susannah Fox

February 11, 2010 By Susannah Fox 34 Comments

If you follow Jeff Jarvis on Twitter or read his blog, you know (maybe more than you wanted to) about his fight against prostate cancer. I’ve mostly paid attention to what he’s written about technology and journalism, but check out this excerpt from his post, The German privacy paradox: I prefer to turn the question […]

Filed Under: patient networks Tagged With: ACOR, health 2.0, patientslikeme, privacy

Superheroes and rock stars at the Institute of Medicine

October 14, 2009 By Susannah Fox 7 Comments

Update: National Cancer Policy Forum published a book based on the workshop, A Foundation for Evidence-Based Practice: A Rapid Learning System for Cancer Care, which you can buy, read online for free, or download as a PDF. The discussion portion of this panel was captured in a short video. ___________________ The Institute of Medicine’s recent […]

Filed Under: key people, Why PM Tagged With: ACOR, Amy Abernethy, Annals Of Internal Medicine, Carolyn Clancy, Chordoma, Clinical Trials, Dartmouth, Emory, Gilles Frydman, Institute Of Medicine, Jamie Heywood, learning health system, Lynn Etheredge, Oncology, Paul Wallace, Transparency, Vanderbilt, Youtube

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

E-patients With Chronic Conditions–Susannah Fox

October 9, 2007 By Susannah Fox Leave a Comment

Sometimes my research becomes a little too much for me to bear alone. Like when I find that people living with chronic disease and disability are among the least likely to have access to the internet, but who, once online, are among the most avid e-patients. Or when I am emailing with an ACOR member […]

Filed Under: patient networks Tagged With: ACOR, cancer, chronic disease, disability, e-patients

Online Patient Groups

June 13, 2007 By Susannah Fox 10 Comments

Laura Landro’s column in the Wall Street Journal features a series of profiles of online patient groups like MPDinfo.org and ACOR.org, among others. Now seems like the right time to post some data that I’ve been holding back, waiting for the right opportunity to talk about it publicly.

Filed Under: patient networks Tagged With: ACOR, health, Landro, mpdinfo, patient groups, survey

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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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