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Susannah Fox

I help people navigate health and technology.

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Quantified Self

Wow! How? Patient-Led Research Scorecards

March 27, 2025 By Susannah Fox Leave a Comment

In Dark Times Shine Your Light Brighter

Most stakeholders in biomedical innovation – scientists, clinicians, patients, caregivers, funders, regulators – recognize each other as allies in the fight against disease. But they often lack shared principles and practices to guide the work they do together. For example, a research organization may say they value patient input, but they do not recognize their […]

Filed Under: Champions, Networkers, patient networks, research issues, Solvers Tagged With: Council of Medical Specialty Societies, COVID19, Emily Sirotich, Gary Wolf, Gina Assaf, Hannah Davis, Helen Burstin, Long Covid, Patient-Led Research Collaborative, PCORI, Quantified Self, Rebel Health, Wow! How? Health

The Black Panther Party’s Health Innovations

February 20, 2025 By Susannah Fox Leave a Comment

Cover of the book Body and Soul by Alondra Nelson. Black and white photo of seated people wearing white coats and taking a blood sample from the finger of a child.

Here is the 40th in my series of “Wow! How? Health” stories, also shared on LinkedIn if you want to follow the conversation on that platform. In 1971, the Black Panther Party diagnosed the federal government’s failure to study sickle cell anemia, a genetic disease believed at the time to be found predominately in people […]

Filed Under: Champions, Networkers, Seekers, Solvers Tagged With: Alfredo Morabia, Alondra Nelson, Bill Wallace, Black Panther Party, Long Covid, Mary T. Bassett, personal science, Quantified Self, Rare Disease, Rebel Health, sickle cell anemia, Wow! How? Health

Too legit to quit

April 18, 2022 By Susannah Fox 17 Comments

Sunflowers with a bee

Sara Riggare, PhD, an expert in patient-led research and personal science, tweeted this animated GIF depicting the common process in starting personal science, which is based on Anne Wright’s work: Andrea Downing was among those who replied, writing: “My feedback: We’ve been saying for years what you outline here. The question is: how do we […]

Filed Under: health data, key people, peer-to-peer health care, research issues Tagged With: Andrea Downing, Anne Wright, Dana Lewis, Gary Wolf, Long Covid, personal science, Quantified Self, Sara Riggare, Unrest

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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