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Susannah Fox

I help people navigate health and technology.

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participatory research

The Promise of Patient-Led Research Integration

January 18, 2023 By Susannah Fox 5 Comments

In Dark Times Shine Your Light Brighter

The Council of Medical Specialty Societies (CMSS) and Patient-Led Research Collaborative (PLRC) have developed a collaborative research model for use by patients and patient organizations, funders, research institutions and other traditional biomedical research teams. The project was funded by a grant from the Patient-Centered Outcomes Research Institute (PCORI). The model is represented by a set […]

Filed Under: participatory research, patient networks, policy issues, research issues Tagged With: Council of Medical Specialty Societies, Gina Assaf, Hannah Wei, Patient-Led Research Collaborative, PCORI

A futurist’s perspective on LongCovid

April 7, 2021 By Susannah Fox 3 Comments

A field of sunflowers bathed in golden light

Maneesh Juneja is a dynamic person, both in person and online, and I’m proud to call him a friend and community colleague. Unfortunately, he has been living with LongCovid, the long-term effects of the COVID-19 virus, for nearly 12 months. If you have not yet watched his recent Health Datapalooza keynote, now is your chance: […]

Filed Under: health data, participatory research, patient networks, peer-to-peer health care Tagged With: Body Politic, COVID19, Health Datapalooza, LongCovid, Maneesh Juneja, sunflowers

From stunt to solution

March 1, 2021 By Susannah Fox 2 Comments

Motorbike stunt rider hanging off the seat, mid-air, against a blue sky

I’m so nostalgic for breathing in other people’s ideas and aerosols that I’m re-reading notes from past meetings. Today’s inspiration: a March 2018 meeting convened by Eleonore Pauwels and Todd Kuiken to discuss barriers to citizen-driven biomedical research. My notes: Community biolabs, incubators, and accelerators are like ramps and bridges for citizens to gain access […]

Filed Under: participatory research, policy issues Tagged With: Eleonore Pauwels, Todd Kuiken

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

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

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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