Evidence is piling up in favor of peer health communities. The question is: How do we sustain them for the long-term? Here are 3 studies (of many) about the benefits of peer-to-peer health advice: A survey of the #bcsm community found that participation lowered people’s anxiety and increased their overall knowledge of breast cancer. A survey of […]
patientslikeme
How peer-to-peer health advice can help people take their meds on time (and so much more)
(Yes, it’s the third post in 5 days from me, but when you’ve got cool stuff to share, why wait?) Matthew Zachary‘s podcast, Out of Patients, is one of my favorites because he brings his whole self to health care discussions, as you’ll hear in our conversation. It was a pleasure to unpack my latest […]
Leveraging data-driven patient participation to accelerate medical research
Here’s a lesson I learn over and over again: Never assume knowledge. Don’t waste your time making a point if you are not sure your audience understands the context for it. Or, as the wise Andy Kohut used to say, “If they don’t get the premise, they won’t get the joke.” Last year I spoke […]
Tracking the trackers
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 […]
Public Q&A: COVID19 precautions and care
As a trusted node on my friends’ “nerd network” (i.e., the people who are known to dig in and research everything so others may not have to) I have been asked a few questions that I’d like to share, in the hopes that other people can add their own perspectives — and new questions! Question: […]
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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