“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 […]
patient networks
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 […]
Rare Disease Day 2019
Today is Rare Disease Day, when we lift up the stories of the 300 million people who live with more than 6,000 rare conditions. This year’s theme focuses on bridging health and social care, alleviating the heavy burden on people who coordinate medical, social, and support services for themselves and their loved ones. The National […]
Public Q&A: Empowering people in their relationships with clinicians
In the spirit of public Q&A, I’m sharing an intriguing question I received recently from a community colleague. Check out my answer and then add your ideas and suggestions in the comments below. Do you know of any particularly good or interesting services to empower patients in their relationships with doctors, especially ones which involve […]
Peer support for when the system fails
What do you do when you know something is wrong but you can’t find anyone to confirm your suspicions? Or when you finally identify the culprit but find out that other people are being kept in the dark? These days it’s likely that you go online and if you are lucky — or determined — […]
A deep dive into food allergy research and education
Longtime followers of this blog know I believe in the power of peers, particularly among people living with rare conditions, and may also know that I am a food-allergy mom. This past weekend I had the chance to attend the annual conference for my rare community, FAREcon, and drink from the peer advice well. Warning: This […]
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