I’m collecting examples of peer health playbooks: the how-to guides that patients and caregivers write so that people following their path won’t stumble into the same pitfalls. If you know of one that is not listed below, please tell me about it in the comments.
- I AM ALS put together a step-by-step playbook of how to approach empowering and mobilizing patient-led organizing efforts.
- Genetic Alliance offers an Advocacy ATLAS (Accessible Tools for Leadership and Advocacy Success).
- Dana Lewis wrote Automated Insulin Delivery as a guide for people considering Do-It-Yourself or other Artificial Pancreas System technology.
- Melissa Hogan and Meghan Marsac wrote AFRAID OF THE DOCTOR: Every Parent’s Guide to Preventing and Managing Medical Trauma.
- Carmen Bombeke, a mother with lived experience, wrote a guide to navigating mental health care and substance use disorder insurance coverage.
- Katherine Onk wrote a glioblastoma playbook when she Googled that phrase and found nothing.
- Lianne Mandelbaum wrote a guide to traveling with food allergies.
- The Caregiver Action Network has a Family Caregiver Toolbox of guides.
- ImproveCareNow lists toolkits and guides to living with inflammatory bowel disease, all written by their Patient Advisory Council.
This is a wide range of topics and issues but I know there are even more out there. I’d love to learn more about what people have created!
Image: A dozen bright yellow sunflowers blooming on a sunny day — one has a bee on it (captured by me last summer when my crop was much bigger than this year).