My book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, is out in the world! You can pick up a copy at your favorite local bookstore (mine is Politics & Prose) or order it from Barnes & Noble, Amazon, or another online retailer.
Thank you for being part of this journey! I use this blog to try out ideas and gather insights. Some of the conversations we’ve had in the comments are reflected in the book, others shaped how I think about peer-to-peer health care and the patient-led revolution more generally.
My hope is to reach two groups of people:
1. Anyone who feels alone, forgotten, or lost in the shadows of suffering, whether they are navigating a new diagnosis or life with a chronic condition. Patients, survivors, and caregivers will learn new skills and how to deploy them for themselves and their loved ones.
2. Anyone working inside health care who is fed up with the status quo. If they are ready to create positive change – improve health outcomes, keep people safe, find effective treatments, or bring better products and services to the market – they need new allies and strategies. Rebels are standing by to help.
Health care needs to invite the rebels inside, to connect them with the resources they need to test and scale their ideas. Rebel Health is a how-to guide.
Media coverage so far:
- The patient-led care revolution – Q&A with Fiona Lowenstein in Harvard Public Health magazine
- A scholar of the patient “revolution” tracks the arc from powerlessness to influence – Q&A with Isabella Cueto in STAT
- The diabetes community and the health care “rebel alliance” – podcast with Stacey Simms
Here’s where I’ll be talking about Rebel Health in the coming months – please join me!
- February 15 online: I will be a virtual guest of the Hudson Library & Historical Society. Registration is free.
- February 18 in Washington, DC: Helen Burstin, MD, and I will talk about the patient-led revolution at Politics & Prose bookstore.
- February 20 in New York, NY: Cure will host me, both in-person and streaming on LinkedIn. Free – but please register.
- March 7 in Princeton, NJ: I will speak at a luncheon hosted by the Princeton Mercer Regional Chamber.
- March 13 in Seattle, WA: Sally James and I will talk about Rebel Health at Town Hall Seattle.
- Full list of upcoming events.
Spread the word!
- When you get your copy, please post a pic on social media and tag #RebelHealth.
- If you like the book, please write a review on Amazon, Goodreads, or elsewhere. If you don’t like it, that’s ok, you don’t need to write a review 🙂
Image by Clara Ganz
You can add to upcoming events your chat on Health Hats, the Podcast to be published on Feb 18. The URL will be https://health-hats.com/pod216.
Thanks, Danny!
i would like to develop a peer to peer facebook group that lets you post your symptoms, and then the page would match you with a peer who has similar symptoms. Any advice?
Rich,
Thanks for asking this question publicly so I can share both my answers and call on others to add their ideas.
Before you build your own tool, there are a few sites you can check out as a start:
Mayo Clinic Connect has a Parkinson’s community:
https://connect.mayoclinic.org/group/parkinsons-disease/
PatientsLikeMe may have the tracking tools that you are looking for:
https://www.patientslikeme.com/conditions/parkinson-s
Inspire.com is another place to look for a dedicated community:
https://www.inspire.com/
Note: There are many more independent sites as well as Facebook communities. These are just 3 I have personally checked out and think are good starting points.
Another way to expand your search is to look at what the Michael J. Fox Foundation recommends in their books & resources guide:
https://www.michaeljfox.org/books-resources
Finally, please take care of yourself. Archangels a company I advise that helps caregivers understand the pressures & stresses they are dealing with and provides resources to help them cope:
https://www.archangels.me/
Hope this helps!