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Susannah Fox

I help people navigate health and technology.

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Body Politic

How connection can lead to change

November 11, 2020 By Susannah Fox 30 Comments

Screenshot of Harvard Business Review article about how chronic disease patients are innovating together online

In April, Harvard Business Review published my article, “How Chronic-Disease Patients Are Innovating Together Online.” Since then I’ve been collecting other stories about people gathering online to solve their own problems — an innovation pipeline powered by what I call peer-to-peer health care. Fortunately and unfortunately, there are many examples. People living with long-term effects […]

Filed Under: patient networks, peer-to-peer health care Tagged With: All of Us, Body Politic, Brene Brown, cdc, COVID19, Quantified Self

Patient-led research is a key element of pandemic response

August 14, 2020 By Susannah Fox 11 Comments

Puzzle with missing pieces

On August 12, the Council of Medical Specialty Societies hosted the fifth webinar in their series focused on COVID-19 and clinical registries. If you missed it — or want to watch it again — here’s the video: Here, also, are the panelists’ slides and a collection of tweets posted in advance of and during the […]

Filed Under: health data, participatory research, patient networks, peer-to-peer health care, research issues Tagged With: Body Politic, Council of Medical Specialty Societies, COVID19, Emily Sirotich, Gary Wolf, Gina Assaf, Hannah Davis, Helen Burstin, patient registries, Quantified Self, rheumatoid arthritis

Advancing clinical registries to support pandemic treatment and response

July 27, 2020 By Susannah Fox 23 Comments

Close up of fuzzy dandelion seeds

The biomedical research model has a blind spot. People living with a condition or disease are traditionally seen as passive sources of data, not active participants in the research. We as a society miss out on promising avenues of inquiry. It’s time to widen our lens. On August 12, I’ll moderate a discussion about how […]

Filed Under: health data, peer-to-peer health care Tagged With: Body Politic, British Medical Journal, Council of Medical Specialty Societies, COVID19, Emily Sirotich, flip teaching, Gary Wolf, Gina Assaf, Hannah Davis, Helen Burstin, patient registries, Quantified Self, rheumatoid arthritis

Accelerating real-time electronic data capture for COVID-19 tracking and response

July 13, 2020 By Susannah Fox 1 Comment

UC Health line graph showing COVID19 cases across their hospital system in July 2020

The Council of Medical Specialty Societies and the Association of Academic Medical Colleges, with support from the Gordon & Betty Moore Foundation, are hosting a webinar series focused on COVID-19 patient registries. They are being offered free and open to the public. The second in the series took place on July 8 and addressed the […]

Filed Under: health data Tagged With: Andrew Ip, Atul Butte, Body Politic, Council of Medical Specialty Societies, COVID19, Jessie Tenenbaum, patient registries, Subha Madhavan, Tellen Bennett

Tracking the trackers

May 13, 2020 By Susannah Fox 25 Comments

In Dark Times Shine Your Light Brighter

UPDATE: On August 12, I’ll moderate a discussion about prioritizing patient engagement and inclusion of patient-generated COVID-19 data in clinical registries. It is being offered free and open to the public. Read a preview post and register here for the webinar. Every day I see a new example of a survey or other tool to […]

Filed Under: health data, participatory research, patient networks, peer-to-peer health care, research issues Tagged With: 23andme, Ancestry, Body Politic, COVID19, cystic fibrosis, Health Data, Open Humans Foundation, patient registries, patientslikeme, Webmd

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popular posts

  • Hack needed: Tiny pills, trembling hands
  • Sunflowers turn to each other for help
  • Hypothesis generator
  • Mystery solved. Again.

Recent Comments

  • Dave deBronkart on Hack needed: Tiny pills, trembling hands: “A later article on Choi’s project: https://www.cbc.ca/radio/asithappens/as-it-happens-the-monday-edition-1.5868846/how-tiktok-users-designed-a-better-pill-bottle-for-people-with-parkinson-s-1.5868848” Jan 17, 19:04
  • Susannah Fox on Hack needed: Tiny pills, trembling hands: “Update: Peer-to-peer connections, open-source design, and new manufacturing capabilities may have yielded a solution. Here’s the story: TikTok Users Rally…” Jan 11, 06:39
  • Susannah Fox on Lessons learned about hospice care: “Erica, thank you for fighting for your grandmother and I’m sorry for your loss. So many themes and vignettes in…” Jan 4, 08:25

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