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Susannah Fox

I help people navigate health and technology.

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Networkers

Wow! How? Drug Interactions

November 3, 2023 By Susannah Fox Leave a Comment

Two sets of hands sort pills into a pillbox

This is a cross-post from my LinkedIn newsletter. Feel free to join the conversation there or post your thoughts in the comments below. People who connect with health peers are able to pool knowledge, track data, and disseminate what they learn. For some, it’s the difference between life and death. For example, Peggy, a woman […]

Filed Under: Networkers, patient networks, peer-to-peer health care, Seekers Tagged With: drugs, kidney disease, Marfan syndrome, medical errors, Networkers, Rebel Health, Seekers, Wow! How? Health

Wow! How? Health

October 13, 2023 By Susannah Fox 6 Comments

Wow! How? Health

Wow! How? Health is a LinkedIn newsletter that will feature the Wow! stories of patients, survivors, and caregivers who are doing extraordinary things, along with the How? lessons that we all can learn. Subscribe to the newsletter or to my blog (I’ll cross-post here). Today’s story is about how connecting with a peer, a “just-in-time someone-like-you,” can make all the […]

Filed Under: key people, Networkers, patient networks, peer-to-peer health care Tagged With: cancer, caregivers, Networkers, Wow! How? Health

The Promise of Patient-Led Research Integration

January 18, 2023 By Susannah Fox 8 Comments

In Dark Times Shine Your Light Brighter

The Council of Medical Specialty Societies (CMSS) and Patient-Led Research Collaborative (PLRC) have developed a collaborative research model for use by patients and patient organizations, funders, research institutions and other traditional biomedical research teams. The project was funded by a grant from the Patient-Centered Outcomes Research Institute (PCORI). The model is represented by a set […]

Filed Under: Networkers, participatory research, patient networks, policy issues, research issues, Solvers Tagged With: Council of Medical Specialty Societies, Gina Assaf, Hannah Wei, Patient-Led Research Collaborative, PCORI

Patient-led innovation

November 7, 2022 By Susannah Fox 43 Comments

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

Update: Here’s a link to the list I created based on the comments gathered here and on Twitter and LinkedIn. I am curating a list of organizations that are putting patient-led innovation to work. What follows is an incomplete list — please help me by sharing YOUR favorite peer-to-peer communities in the comments below. Extra […]

Filed Under: Champions, Networkers, patient networks, peer-to-peer health care, Seekers, Solvers Tagged With: MIT Press, peer-to-peer healthcare, Rebel Health

Celebrating #BCSM as a peer health innovation

August 20, 2021 By Susannah Fox 6 Comments

A man and woman walking on a trail

Cancer patients were among my first peer health innovation teachers and remain, years later, among my favorite communities to follow. I keep an eye out for hashtags like #gyncsm (gynecological cancer social media), #bcsm (breast cancer social media), and #lcsm (lung cancer social media) on Twitter. I listen to podcasts like The Cancer Mavericks (and […]

Filed Under: e-patient stories, Networkers, patient networks, peer-to-peer health care, pts as teachers Tagged With: #bcsm, #gyncsm, #hcsm, #lcsm, Alexandra Drane, Alicia Stales, breast cancer, Dana Lewis, Deanna Attai, Elizabeth O'Riordan, Jodi Sperber, Jody Schoger, Leslie Schover, Matthew Zachary, peer health innovation, Trisha Greenhalgh, Unmentionables

Consumer-strength tools,
industrial-strength innovation

August 10, 2021 By Susannah Fox Leave a Comment

Group of people in front of huge screen of numbers

On August 31, I’ll be part of the 2021 Federal Wearables Summit. This post is my attempt to “flip” the event by sharing what I intend to say. Please let me know what you think in the comments below. In 1986, Eric von Hippel of MIT identified “lead users” as people who identify and solve […]

Filed Under: Champions, health data, Networkers, patient networks, peer-to-peer health care, policy issues, Solvers Tagged With: Body Politic, Cajun Navy, Eric von Hippel, Fiona Lowenstein, LongCovid, MIT Press, Patient-Led Research Collaborative, Rock Health, self-tracking, wearables

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Recent Comments

  • Lisa Suennen on Wow! How? Community: “That is a beautiful story. Kids always have the best answers” Aug 29, 11:31
  • Susannah Fox on Lessons learned about hospice care: “Zoe, thank you for the unvarnished comment! We need to go into end of life with our eyes open in…” Aug 5, 14:20
  • Zoe on Lessons learned about hospice care: “I despise home hospice and the entire industry can kiss my ass. I was duped into caring for my dying…” Aug 5, 03:45

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