• Skip to primary navigation
  • Skip to main content
  • Skip to footer

Susannah Fox

I help people navigate health and technology.

  • Home
  • Rebel Health
  • Blog
    • greatest hits
    • health data
    • peer-to-peer health care
    • public Q&A
  • About me
    • Bio
    • Now
    • Curriculum vitae
  • Events

Health Care Decisions

Participatory medicine and health data rights on NPR

November 16, 2009 By Susannah Fox 10 Comments

NPR’s Morning Edition story, “Patients Turn to Online Buddies for Help Healing,” combined research and real-life examples, participatory medicine and health data rights. Much of what I said during my interview with Joseph Shapiro is based on what I’ve written and read here on e-patients.net, so, first, thank you. I’ve already started answering questions on […]

Filed Under: general, health data Tagged With: Answering Questions, Assertions, Buddies, Case Mix, Collective Decisions, Health Care Decisions, Health Care Revolution, Health Data, health information, Health Professionals, Health Searches, Health Systems, John Horrigan, Joseph Shapiro, Medicine, Medicine And Health, Mediums, npr, Offline Sources, Pareto Principle, Partnership, Person Accounts, Pew Research Center, Real Health, Tom Ferguson, Twitter, Walks Of Life

Health IT Policy: E-patients want access

September 17, 2009 By Susannah Fox 10 Comments

What would you say to policymakers who are discussing the implementation of a national health information infrastructure? Here’s what I’d say: E-patients want access to tools and information.  Many will find what they need, many will not. You can help.

Filed Under: health data, medical records, policy issues, reforming hc Tagged With: American Adults, American Association Of Retired Persons, Choice Control, Data Stewardship, Doct, Early Days Of The Internet, Health Care Decisions, Health Data, Health Information Infrastructure, Health Information Technology, Internet Adoption, Internet Health Care, National Coordinator, National Health Information, New Tools, Patient Choice, Patient Privacy, Patient Privacy Rights, pew internet project, Regenstrief Institute, Social Impact Of The Internet

E-patient Interview: Keith Schorsch–Susannah Fox

June 6, 2008 By Susannah Fox 7 Comments

When Keith Schorsch began suffering from facial paralysis, fatigue, and severe muscular and skeletal pain, eleven doctors failed to identify the cause. Luckily, a friend recognized the symptoms as similar to what she had suffered when she had Lyme disease – and that’s the clue that saved Keith. Keith turned his experience into a consumer […]

Filed Under: e-patient stories, others' e-patient stories Tagged With: Baby Boomers Age, Consumer Survey, Facial Paralysis, Finding Health, Health And Wellness, Health Care Decisions, Health Consumer, Health Consumers, Health Experience, Huge Wave, Lyme Disease, Passive Role, Patient Interview, Patient Story, Personal Context, Personal Health Decisions, Schorsch, Skeletal Pain, Unmet Health, Wellness Issues

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

E-patient Interview: Amy Tenderich–Susannah Fox

April 18, 2008 By Susannah Fox 5 Comments

Amy Tenderich is the engine behind DiabetesMine, “a gold mine of straight talk and encouragement for people living with diabetes.” Hearing her speak at Health 2.0 was a highlight of the conference for me and she just co-authored a book, so I wanted to bring her over to our page and ask a few questions […]

Filed Under: e-patient stories, others' e-patient stories Tagged With: 99s, American Healthcare System, Asking The Right Questions, C Section, Collective Voice, Continuous Glucose, Diabetes Diagnosis, Glucose Monitors, Godsend, Gold Mine, Health Care Decisions, Health Insurance, Information Patients, Insulin Pumps, Kick Ass, Living With Diabetes, Patient Interview, Share Experiences, Straight Talk, Time In History, Type 1 Diabetes

E-patient Interview: Stirrup Queen

April 16, 2008 By Susannah Fox 7 Comments

Cheryl Miller has written an excellent article, “Blogging Infertility,” in The New Atlantis. She brings up a lot of themes that have been echoing throughout my other reading: a once-silent group newly empowered by the internet; teaming patients with similar profiles; home-care tips (there could be a whole blogroll on injections, btw, starting with AmyT […]

Filed Under: e-patient stories, maternity, others' e-patient stories Tagged With: Cheryl Miller, Community Member, Ectopic, Endo, Health Care Decisions, New Atlantis, Nicu, Patient Community, Patient Interview, Peggy Orenstein, pregnancy, Reconnection, Self Advocate, Stirrup, Treatment Choices, Waiting For Daisy, Waiting Rooms

Footer

Explore

Don't miss a post

Enter your email address and receive notifications of new posts by email.

Topics

  • Seekers
  • Networkers
  • Solvers
  • Champions
  • Health Data
  • Peer-to-Peer Health Care
  • Public Q&A

Recent Comments

  • Susannah Fox on Jean Nidetch, Rebel Health leader: “Yes! I have enjoyed learning more about her personal story, which is a parable of midcentury feminism. WW was a…” May 9, 10:10
  • barbara figge fox on Jean Nidetch, Rebel Health leader: “Jean Neditch helped so many of us! She changed the landscape for weight reduction by leveraging peer support.” May 9, 08:11
  • 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

Copyright Susannah Fox © 2025 · WordPress · Log in