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Susannah Fox

I help people navigate health and technology.

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Helen Burstin

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

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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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