(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 […]
patientslikeme
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 […]
Building the evidence base for peer health advice
Imagine an intervention that produces results like these: One-third of those living with chronic conditions are now more likely to take necessary medications. The risk of admission to a neonatal ICU during first year of life reduced by 63%. People with with poorly-controlled diabetes were able to achieve a 1.1-point reduction in their HbA1c. Each […]
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