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Susannah Fox

I help people navigate health and technology.

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Body Politic

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

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, North Carolina, 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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Recent Comments

  • James on Wow! How? Obesity Treatment: “Inspiring read! Ilant Health’s holistic, shame-free approach to obesity care is exactly what’s needed to address a complex condition with…” Sep 30, 01:23
  • Susannah Fox on Caregiving in America: “I hear you, Mickey! You likely already know about Caring Across Generations and other organizations that have tried to move…” Sep 25, 14:51
  • Mickey Alderman on Caregiving in America: “Interesting information. Being unpaid is a huge issue that has been ongoing for decades. The question we keep asking is…” Sep 25, 10:42

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