About the Patient-Led Research Collaborative

About

The Patient-Led Research Collaborative is a group of Long COVID patients and patients with associated illnesses such as ME/CFS and POTS, who are also researchers. We were born out of the Body Politic Slack support group and did the first research on Long COVID in April 2020. We are all researchers in relevant fields – biomedical research, participatory research, neuroscience, cognitive science, public policy, machine learning, human-centered design, health activism – in addition to having intimate knowledge of COVID-19.

Mission

Our mission is to facilitate patient-led and patient-involved research into Long COVID and associated conditions while following rigorous research methodology, and to advocate for policies that enable patients, particularly the most marginalized, to access care and live with dignity. We ground our work in the principles of disability justice and participatory research methods, and in the knowledge that those who experience an illness are best able to identify research questions and solutions.

We value open science and sharing our progress. See our Q&A and project transparency for more.

Our Work

We have published many papers and co-authored multiple others with collaborators from N3C, Yale, University of Toronto, Imperial College London, University College London, and others.

We regularly meet with the CDC, WHO, NIH and other official medical associations and governments to inform their ongoing Long COVID responses and guidelines. We also consult for other researchers doing work on Long COVID to strengthen their research.

We have several major projects underway:

• a $5 million fund for biomedical research, where all awards are decided by patients
• a study looking at how reinfections impact people with and without Long Covid
• an ongoing publication of patient-generated hypotheses designed to give researchers ideas to pursue
• a qualitative research project looking at the impact of Long Covid in LMIC countries
• a collaboration with CMSS on a grant from PCORI to create a patient-led scorecard for patient involvement in research
• a paper on who does and does not have mental health outcomes in Long Covid
• a review paper on existing Long Covid biomedical research
• a project to analyze and create phenotypes of Long Covid

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