Crowdsourcing and Grass Roots Patient Movements Have the Power to Disrupt the Healthcare System by Jill Gambaro

The Los Angeles Repetitive Strain Injury Support Group was a group of patients who got together monthly to figure out carpal tunnel syndrome. I wouldn’t really call us a support group we didn’t talk about how we felt or how our lives were falling apart. Rather, we recognized that our doctors didn’t know how to treat our injuries, and no one had a bigger stake in our wellness than we did. So we took it upon ourselves to try find answers.  What made LARSI unique was that most of us had advanced degrees, many earned six figures, and a good number were either supervisors themselves or small-business owners. We could see both sides of the question and understand why the insurance companies were giving us such a hard time. We saw that the medical establishment was not conducting helpful research because there was no money in it for them. We recognized that we formed our own data pool and we used our knowledge productivity to harness that data ourselves.

When you can barely feed and bathe yourself, are threatened by eviction, and in tremendous pain, you don’t much care about the scientific method. You want to find something that works for you. So rather than adhere to controlled studies, we relied on anecdotal evidence and our own judgment on how to proceed as individuals. We conducted what I would call intelligent experiments with our individual conditions. We didn’t know it then but we were pioneers in crowdsourcing.

Unfortunately, LARSI no longer exists because, well people who can’t type or make phone calls can’t keep a group running either. But other local groups just like it soldier on across the globe.  They have become a grass roots patient movement borne out of necessity, but with powerful implications. Whether its fibromyalgia or dystonia or any other medical mystery where the establishment can’t or won’t provide answers, patients turn to each other. Social media has accelerated this, allowing for global sharing. These groups are rich in big data and have the ability to disrupt the healthcare system in powerful ways.

I’m thinking about how retirees, before there was any prescription drug coverage available through Medicare, turned to the supplements market for relief and often found better alternatives to pharmaceuticals. Even though big pharma eventually figured out it was in their best interests to stop this and lobbied Congress for prescription drug coverage to Medicare patients, they were unable to stem the tide of what patients had learned from taking supplements: that there is a better way to approach health. The implications have permeated not only our healthcare system but also public policy.

I’m thinking too about common ailments like the backaches and constipation and insomnia, where patients have been medicated rather than cured.  There too, patients have turned to alternative modalities for relief with far greater results and now disciplines like chiropractic and acupuncture have entered the insurance system.

It seems to me that the medical establishment is missing a tremendous opportunity in these support groups. Whether it's fibromyalgia or chronic fatigue or RSIs, the people who suffer these ailments tend to be type A personalities, which makes them very driven to find answers. Not the passive patients our healthcare system has fostered. Researchers should collaborate with these underground networks to, at the very least, shape their studies. If they don’t, the institutions that fund them face the risk of a catastrophic loss of business.

Keywords: healthcare, disruptors, patient advocacy, chronic pain, public policy,