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 […]
patient networks
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 […]
Unrest
The film “Unrest” will debut on Independent Lens this week (check your local listings — in the DC area it will air on Jan. 12 at 10:30pm on WETA). I couldn’t wait and bought my own digital copy on Amazon. Let me just say: It’s no surprise that it’s on the short list for an Academy […]
Medicine’s cultural “caution tape”
I’m honoring the contributions of my community colleagues over the years by pulling out some of their best comments and quotes. Jack Penner, in response to “His doctors were stumped. Then he took over” (2017): In terms of how can we empower patient to become active participants, one thing that comes to mind is lowering […]
Case study: Brain surgery
We have a “last mile” problem in patient communities. In the first post of this series, I asked for general advice about finding your people — the peers who could give you advice about your health condition and answer even your most secret questions. Now I’d like to focus on how someone would approach getting […]
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