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Susannah Fox

I help people navigate health and technology.

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peer-to-peer health care

Mystery solved. Again.

January 7, 2020 By Susannah Fox 13 Comments

A man sits alone in a lifeboat saying to himself, "I feel so alone. There's no one out there like me."

Friends, I have yet another so-extraordinary-it’s-ordinary story of peer-to-peer health care to share. Andrew Wilkinson wrote on Twitter: A few months ago, as a last ditch effort, I posted on Twitter about the horrible acid reflux which I’d been suffering from for almost 10 years. I had tried just about everything. Proton pump inhibitors, dietary […]

Filed Under: Networkers, peer-to-peer health care, Seekers, social media Tagged With: peer-to-peer healthcare, Twitter

What’s your advice?

November 12, 2019 By Susannah Fox 19 Comments

Arrows connect Give and Take; a bracket shows that Care encompasses both.

My dad was a survivor — of a heart attack in his 50s, kidney cancer in his 60s, and an initial diagnosis of melanoma in his 70s. Melanoma recurrence and complications of treatment are what finally got him. A lifelong runner, Dad kept meticulous notes about his mileage and heart rate on paper. He bought […]

Filed Under: health data, peer-to-peer health care Tagged With: cancer, caregivers, family, Tracking for Health

Sunflowers turn to each other for help

October 8, 2019 By Susannah Fox 9 Comments

Sunflowers with a bee

Sunflowers have always been my favorite flower and now I know why: They turn to each other for help. Image: My backyard sunflower patch at its midsummer height (I gave up on growing vegetables this year and reaped a crop of beauty instead).

Filed Under: beauty and wonder, peer-to-peer health care Tagged With: sunflowers

A helping hand, just in time

August 26, 2019 By Susannah Fox 5 Comments

D-ABNT by Benedikt Lang on Flickr - cropped

Some years ago a few colleagues and I got stuck at Logan Airport and we started telling stories to pass the time. One tale has come back to me over and over again, particularly as I cared for my dad during his last year of life, because it reminded me to be open to the possibility […]

Filed Under: peer-to-peer health care Tagged With: Francis Collins, NIH, Rare Disease, rare diseases, Sharon Terry

Assessing the quality of peer health advice

August 12, 2019 By Susannah Fox 37 Comments

Trust

“Can you really trust what you read online?” is a frequent (and valid) question about online health information, particularly peer to peer advice. People who are part of healthy peer communities sometimes scoff at the question since they see so much good coming from the opportunity to connect and share information. But how might we […]

Filed Under: patient networks, peer-to-peer health care Tagged With: Information Quality, John Grohol, peer-to-peer healthcare, Trustworthiness

A Matter of Trust, Perception, Risk, and Uncertainty

July 1, 2019 By Susannah Fox 18 Comments

Black and white image that resembles a Rorschach ink blot

The Big Issues Raised by the Acquisition of PatientsLikeMe and Other Patient Data Transactions By Susannah Fox, Jane Sarasohn-Kahn and Lisa Suennen I’ve lived long enough to have learned The closer you get to the fire the more you get burned But that won’t happen to us Cause it’s always been a matter of trust -A […]

Filed Under: health data, news & gossip, patient networks, peer-to-peer health care, policy issues Tagged With: ALS, Jane Sarasohn-Kahn, Lisa Suennen, patientslikeme, Trustworthiness

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Recent Comments

  • Liz on Rare Disease in the NYT: “The author’s willingness to grapple with her competing instincts is admirable. As a former “medical mom,” I found the peer-connection…” Jul 1, 21:46
  • Carrie Kimmell on Case study: Trevor’s disease: “Hi Jill – currently Brandon is walking without a limp (he is almost 15 now). He was going to undergo…” Jun 5, 14:07
  • Jill H. on Case study: Trevor’s disease: “Hello Carrie, I am curious how your son is doing after the surgery? Were you able to fix the locked…” May 28, 19:07

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