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Susannah Fox

I help people navigate health and technology.

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Archives for February 2020

Public Q&A: Peer support for parents of teens with cancer

February 24, 2020 By Susannah Fox 9 Comments

Peer to peer health advice: your community may really be your superpower

Helen Burstin, MD, reached out to ask if I know of an online peer-to-peer support group for parents of teens with cancer. For anyone who knows Helen: Don’t worry, it’s not for her own family. She is asking on behalf of a friend, who writes: “I’ve been able to find groups for parents of children […]

Filed Under: peer-to-peer health care, public Q&A Tagged With: cancer, caregivers, family, parents, peer-to-peer healthcare, teens

What if your clinician gave you a prescription to check out a patient group that they knew to be good?

February 12, 2020 By Susannah Fox 44 Comments

Post-it notes fill one section of a diagram

Amy Gleason (@ThePatientsSide) captured this line of mine, delivered on a panel at the Health Datapalooza yesterday. Her tweet generated an interesting cascade of reactions ranging from: “This is potentially dangerous” to “This is obvious (and old news).” I thought I’d expand on my observations and see if people want to expand on theirs in […]

Filed Under: patient networks, peer-to-peer health care, public Q&A Tagged With: ACOR, Bon Ku, Danny Sands, David Fajgenbaum, E-Patient Dave, Health Datapalooza, peer-to-peer healthcare

Chasing cures

February 3, 2020 By Susannah Fox 10 Comments

Decorative: blue gossamer

Bon Ku, MD, a regular on the TV show “Chasing the Cure,” and David Fajgenbaum, MD, MBA, author of CHASING MY CURE, invited me to join their upcoming panel at the Health Datapalooza. Guess what title we chose? We are nothing if not consistent: Chasing cures. We intend to focus on how open source principles can break […]

Filed Under: health data, Networkers, patient networks, peer-to-peer health care, policy issues, Seekers Tagged With: flip teaching, Health Datapalooza, Rare Disease, rare diseases

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  • Susannah Fox on Patient Input on Clinical Trials: “Great question, thank you! My impression is that our best bet is to make it appeal to study sponsors as…” Oct 17, 10:26
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