I've been writing about how to solve stroke for 14 years. Never once in those years have I been contacted by any stroke association or stroke medical 'professional'. It is precisely as Amy Farber says: 'laboratory rat'.
We have to get past what Amy Farber had to say, For the past five years Amy Farber has been battling not only her own disease but also the wall
of resistance erected by those who believe that a patient can make about
as much of a meaningful contribution to the process of scientific
discovery as a laboratory rat. LAM, lymph-angiolio-myomatosis. She
co-invented a revoluntionary web service with MIT Media Lab that enables
patients to participate in the search for their own cures.
Very
obviously nothing I've done in the past 14 years has made a bit of
difference in stroke, but I'm persistent. Hell, I'm worth more that any
stroke association leader out there, they do nothing to solve stroke! Contact me at oc1dean@gmail.com if you're willing to listen to a survivor.
A scholar of the patient ‘revolution’ tracks the arc from powerlessness to influence
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At the end of each chapter in “Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care,” there’s a box. It summarizes the chapter, distilling what a reader just encountered into easy-to-digest bullet points. The author, Susannah Fox, admits she stole that idea from “The Long Covid Survival Guide,” which was written by patients for patients.
“One of the challenges with chronic illness and being exhausted is that you might have actually just forgotten what you just read,” Fox told STAT.
That small gesture — a snapshot of information in an easy-to-read format — is in itself a product of the patient-led movements Fox studies and writes about in her book, which will be published by MIT Press on Feb. 13.
But “Rebel Health” also taps into the knowledge that Fox has accumulated over decades of studying online patient communities. Her resumé reads as an eclectic combination of high-end roles, from former Chief Technology Officer for the Department of Health and Human Services under the Obama Administration, to an entrepreneur-in-residence at the Robert Wood Johnson Foundation, and directing the health portfolio at the Pew Research Center’s Internet Project. But the throughline has always been the people leveraging technology to get some answers.
STAT spoke to Fox about her years of researching patient forums, the historical roots of patient-led innovation, her new book, and what people in private industry or government should be doing to leverage the wisdom of patient communities and solve unmet health needs.
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