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Susannah Fox

I help people navigate health and technology.

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LongCovid

LongCovid’s citizen scientists

February 1, 2021 By Susannah Fox 9 Comments

Flock of black birds flying together in a blue sky

Amy Dockser Marcus writes with the sensitivity and precision of a scientist, which is why I was thrilled that she recently turned her attention to the patient-led research being conducted by people with LongCovid, which affects an estimated 10-20% of COVID-19 patients. The Wall Street Journal‘s pay wall may prevent you from reading the full […]

Filed Under: participatory research, peer-to-peer health care, research issues, social media Tagged With: Amy Marcus, Emily Sirotich, Eric Topol, Gina Assaf, Helen Burstin, LongCovid, peer-to-peer healthcare, Wall Street Journal

Crazy, crazy, LongCovid, obvious

January 25, 2021 By Susannah Fox 15 Comments

Flock of geese flying in one direction together

LongCovid is an extraordinary challenge to the human body. It’s been met with an extraordinary response from the human spirit. As I wrote in a previous post, we are watching patients, caregivers, clinicians, researchers, and policymakers move through the stages of peer-to-peer health innovation at a fast clip. Faster than I’ve ever seen in my […]

Filed Under: patient networks, peer-to-peer health care, pts as teachers Tagged With: Body Politic, Kevin Kelly, LongCovid, NIH, peer-to-peer healthcare

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, LongCovid, 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, 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

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