I first met Susannah Fox at MedX in 2012 and have followed her career and blog ever since. Susannah learned from patients and online communities as she directed the PEW Research Center's Internet Project health portfolio, was entrepreneur-in-residence at the Robert Wood Johnson Foundation and as former Chief Technology Officer for the Department of Health and
Human Services under the Obama Administration. When I heard the she was writing a book I couldn't wait to read it. Rebel Health is not just about advancements in health care but rather as it states on the cover it is A Field Guide to the Patient-led Revolution in Medical Care. How have patients when given a health challenge can lead a revolution? They ask "how might I improve my device?" ... "Get the support I need?"... "Find others with my rare disease" etc and then go do it!
I placed a hold on the book at my local library when it was published in February of this year. I picked up the book and read it. Then I went on Amazon and bought my own copy so I could highlight portions I found most interested. There are a lot of highlighted sections, by the way.
Some sections of the book dealt with patient-led developments in cancer care such as the cancer hashtag communities on X/Twitter. But I also found interesting sections on other health issues. One condition highlighted was insulin dependent diabetes. The book describes how Dana Lewis (who I also met at MedX) wanted her glucose monitor to have a louder alarm. She needed access to her monitor's data but the device companies said no. So she networked with others and built a custom solution. The book also includes examples of caregivers and rare disease survivors who made a difference in their lives or the lives of their loved ones by being leaders in the patient-led revolution
Like Lewis and Liz Salmi, a brain cancer survivor and founder of the #btsm community, others are leading the revolution and becoming experts. Fox classifies these expert patient advocates as four arche-types:
Seeker - Go on the hunt when things are not right
Networker - "Connection is the antidote"
Solver - attack the problem, identifies the problem, tests and develops a solution
Champion - takes ideas and scales up the innovation
I describe myself as both a Seeker and as a Networker. I consider myself a cancer research "hound"(Seeker) and along with Christina Lizaso we bring people diagnosed with gyn cancers together with researchers and clinicians in the #gyncsm community on X (networker). Which archetype are you?
If you are a patient, caregiver or advocate don't shy away from a challenge rather read this book be inspired and guided to lead your own revolution, solve problems, give hope and make a difference in your life or the lives of others.
Dee
Every day is a Blessing!
