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Susannah Fox

I help people navigate health and technology.

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Sharon Terry

Chasing cures

September 10, 2019 By Susannah Fox 7 Comments

CHASING MY CURE book cover

Years ago, I met a mom of a child with a rare disease who matter-of-factly shared her story, which included as many twists and close calls as any blockbuster summer movie. I marveled at her heroism and she said no, she rejects that description. “I’m not a hero,” she insisted. “I’m a typical mom. You […]

Filed Under: e-patient stories, key people, positive patterns Tagged With: Abby Norman, Afternoon Napper, Bon Ku, Dana Lewis, David Fajgenbaum, Doug Lindsay, Rare Disease, rare diseases, Sharon Terry, Terry Jo Bichell

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

Access to results that matter

October 26, 2017 By Susannah Fox 16 Comments

Painting of people climbing cell structures

The Patient-Centered Outcomes Research Institute (PCORI) will kick off their annual meeting on Tuesday, October 31. I will moderate the first panel, “Access to Results That Matter,” and, as I like to do, I’m starting the conversation early online. Here’s the session description: Traditional health research often does not provide the answers to patients’ questions […]

Filed Under: health data, participatory research, policy issues, research issues Tagged With: Ben Goldacre, Bishop Simon Gordon, David Lansky, Diane Padden, flip teaching, Freddie White-Johnson, PCORI, Regina Holliday, Sharon Terry, Stephanie Buxhoeveden

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  • Susannah Fox on Seekers go out on the hunt: “Thank you, Cam! So many nuggets of wisdom in your comment. Love the old-school spiral notebook combined with the digital…” May 20, 15:09
  • Cam Teems on Seekers go out on the hunt: “Susannah – First, as a seeker on behalf of my child, I had to gird my loins and know I…” May 19, 16:56
  • Susannah Fox on Caregiving is not a “career break”: “Thanks for the tip, Diane. Is this the article you read? Family Caregiving: A View From the Inside https://www.aarp.org/caregiving/home-care/info-2022/history-of-family-caregiving.html I…” May 9, 08:59

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