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Susannah Fox

I help people navigate health and technology.

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patient networks

E-patient Interview: Sheryl Stein

May 1, 2008 By Susannah Fox 5 Comments

Sheryl Stein, known to many as “wrekehavoc,” dispenses her wisdom and humor on a 6,000-member online community of parents (using good old listserve technology) and on her blog. In this third edition of our e-patient interviews, Sheryl talks about the power of community and how “reaching out via the internet is now an ingrained habit […]

Filed Under: e-patient stories, others' e-patient stories Tagged With: blog, chronic disease, Common Variable Immunodeficiency, community, CVID, Delivery Methods, Diagnosis, Diagnostician, e-patient, Gammaglobulin Therapy, Health Care Decisions, Humor On, Immune Deficiency Foundation, Ingrained Habit, Listserve, NIH, No Doubt, Pamphlets, Patient Interview, Patient Interviews, patient networks, Pharmaceutical Company, Pros And Cons, Self Advocate, self-care, Whopper

Health Education vs. Outcomes–Susannah Fox

June 28, 2007 By Susannah Fox Leave a Comment

The Pew Internet Project has found that the internet has a significant impact on decisions about which school to attend, but it does not play a big role in other “major life moments.” Is there something similar in health care? Are there conditions and diseases which are more likely to yield to an e-patient’s ability to change the outcome? Is it enough that e-patients are more informed and feel empowered by information, or should we expect more?

Filed Under: reforming hc Tagged With: cancer, chronic pain, e-patient, patient networks, pregnancy

Patient-Driven Content at MedShelf.org–Susannah Fox

May 10, 2007 By Susannah Fox Leave a Comment

Online support groups have long been recognized as an important and unique source of medical information and social support for patients. Derek Hansen, Paul Resnick, and Sean Munson at the University of Michigan’s School of Information, are trying to help online support groups create community repositories using wiki software at http://medshelf.org.

Filed Under: patient networks Tagged With: bulletin boards, derek hansen, e-patients, email listserves, health information, medshelf, online support groups, patient networks, university of michigan, wiki

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popular posts

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Recent Comments

  • Dave deBronkart on Hack needed: Tiny pills, trembling hands: “A later article on Choi’s project: https://www.cbc.ca/radio/asithappens/as-it-happens-the-monday-edition-1.5868846/how-tiktok-users-designed-a-better-pill-bottle-for-people-with-parkinson-s-1.5868848” Jan 17, 19:04
  • Susannah Fox on Hack needed: Tiny pills, trembling hands: “Update: Peer-to-peer connections, open-source design, and new manufacturing capabilities may have yielded a solution. Here’s the story: TikTok Users Rally…” Jan 11, 06:39
  • Susannah Fox on Lessons learned about hospice care: “Erica, thank you for fighting for your grandmother and I’m sorry for your loss. So many themes and vignettes in…” Jan 4, 08:25

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  • Beauty and Wonder
  • Demographics
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  • Participatory Research
  • Peer-to-Peer Health Care
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