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Susannah Fox

I help people navigate health and technology.

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patient networks

The Promise of Patient-Led Research Integration

January 18, 2023 By Susannah Fox 5 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: participatory research, patient networks, policy issues, research issues 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 30 Comments

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

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 credit if you can share how they have had an impact on the public conversation, treatment of a condition, device […]

Filed Under: patient networks, peer-to-peer health care Tagged With: MIT Press, peer-to-peer healthcare

Should peer health community moderators get paid?

September 2, 2021 By Susannah Fox 29 Comments

Sandhill cranes taking flight at sunrise

Evidence is piling up in favor of peer health communities. The question is: How do we sustain them for the long-term? Here are 3 studies (of many) about the benefits of peer-to-peer health advice: A survey of the #bcsm community found that participation lowered people’s anxiety and increased their overall knowledge of breast cancer. A survey of […]

Filed Under: key people, patient networks, peer-to-peer health care Tagged With: #bcsm, breast cancer, CGM in the Cloud, Deanna Attai, diabetes, epilepsy, patientslikeme

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

Doing the work

July 9, 2021 By Susannah Fox 19 Comments

Close-up photo of a green leaf

I am thrilled to share that I am writing a book for MIT Press about the alchemy, grit, and soul of the health innovation pipeline that is powered by people connecting with each other to solve problems. Here’s the back story, which illustrates one of my core principles: Do the work that needs to get […]

Filed Under: health data, patient networks, peer-to-peer health care Tagged With: Bob Prior, Body Politic, Emily Sirotich, Gary Wolf, Gina Assaf, Hannah Davis, Helen Burstin, Jennifer Brea, Kate Lorig, LongCovid, MIT Press, Tanya Basu

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