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Susannah Fox

I help people navigate health and technology.

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Gary Wolf

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, LongCovid, 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, LongCovid, patient registries, Quantified Self, rheumatoid arthritis

How to make 10 million discoveries

January 11, 2020 By Susannah Fox Leave a Comment

Wave Group Photo by Michael Cannon on Flickr

When people’s questions go unanswered, they don’t stop asking them. They turn to Dr. Google and other sources. They try to solve their own mysteries, using whatever they can find. This is an opportunity that some people misread as dangerous or wrong. How might we help more people contribute to discovery of new treatments or […]

Filed Under: key people, participatory research, research issues Tagged With: Gary Wolf, Quantified Self

Quantified Self Public Health Symposium

April 6, 2014 By Susannah Fox 13 Comments

Health Patch from Vital Connect

On April 3, I was part of  a symposium organized by Bryan Sivak, CTO, U.S. Department of Health and Human Services; Larry Smarr, Director, Calit2; and Gary Wolf, Director, Quantified Self Labs, where I presented the Pew Research Center’s findings on tracking for health. I uploaded my remarks in a separate post — this one is more of a “notes […]

Filed Under: key people, participatory research, pt/doc co-care, pts as teachers, research issues Tagged With: Gary Wolf, Pew Research Center, public service, QSPH, Quantified Self

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popular posts

  • Crazy, crazy, LongCovid, obvious
  • Sunflowers turn to each other for help
  • Hack needed: Tiny pills, trembling hands
  • Case study: One in a million diagnosis

Recent Comments

  • Susannah Fox on Crazy, crazy, LongCovid, obvious: “Maneesh, thank you! I want to highlight one of the great points you make: Someone should be documenting the real-time…” Jan 26, 10:57
  • Susannah Fox on Crazy, crazy, LongCovid, obvious: “Thank you, Carolyn! My hope is that because clinician leaders like NIH Director Francis Collins are praising the patient-led researchers’…” Jan 26, 10:23
  • Susannah Fox on Crazy, crazy, LongCovid, obvious: ““I can tell you the names of all the women who reached out to respond.” That resonates. My own experience…” Jan 25, 13:11

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