Every day I see a new example of a survey or other tool to collect individual-level experiences with COVID-19. Some are organized at the grassroots, others are sponsored by companies or academic medical centers. Some are for support, others for epidemiology, and still others for clinical discovery. Some would be recognized as patient registries, others […]
patient networks
Public Q&A: Patient registries
A community colleague asked for advice about how an organization can boost the signal for their patient registry. Recruitment levels are not what they expected and nowhere near what they need. I’m sharing what I wrote back so that others can chime in with their advice in the comments. First, look at what successful registries […]
What if your clinician gave you a prescription to check out a patient group that they knew to be good?
Amy Gleason (@PatientSide) captured this line of mine, delivered on a panel at the Health Datapalooza yesterday. Her tweet generated an interesting cascade of reactions ranging from: “This is potentially dangerous” to “This is obvious (and old news).” I thought I’d expand on my observations and see if people want to expand on theirs in […]
Chasing cures
Bon Ku, MD, a regular on the TV show “Chasing the Cure,” and David Fajgenbaum, MD, MBA, author of CHASING MY CURE, invited me to join their upcoming panel at the Health Datapalooza. Guess what title we chose? We are nothing if not consistent: Chasing cures. We intend to focus on how open source principles can break […]
Assessing the quality of peer health advice
“Can you really trust what you read online?” is a frequent (and valid) question about online health information, particularly peer to peer advice. People who are part of healthy peer communities sometimes scoff at the question since they see so much good coming from the opportunity to connect and share information. But how might we […]
A Matter of Trust, Perception, Risk, and Uncertainty
The Big Issues Raised by the Acquisition of PatientsLikeMe and Other Patient Data Transactions By Susannah Fox, Jane Sarasohn-Kahn and Lisa Suennen I’ve lived long enough to have learned The closer you get to the fire the more you get burned But that won’t happen to us Cause it’s always been a matter of trust -A […]
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