"Citizen scientist" patient groups have been known since the dawn of the Web, but never has there been as potent and urgent an example as the "Long COVID" community that arose in desperation last year: COVID-19 patients who never get better. Their ability to connect, convene, document their symptoms and crowdsource their data led within months to acceptance by establishment medicine - the CDC, NIH and more.
These are "superpatients" - a term coined in 2019 by our speaker "e-Patient Dave." They're patients who extend science when medicine's not getting the job done. Long COVID patients are the most spectacular example, and the first to rapidly gain scientific recognition. In this session we'll learn the history of these super-engaged patients and examine exactly how social media is enabling their achievement - and what health care can learn from it.
Dave deBronkart / "e-Patient Dave"
Founding co-chair, HL7® Patient Empowerment Workgroup
Moderator, FHIR® DevDays Patient Innovator Track
BMJ Patient Advisory Panel inaugural member, 2014-2020
OpenNotes Advisory Board
Co-founder and Chair Emeritus, Society for Participatory Medicine