Disrupting the healthcare institution

One day many years ago, in a roomful of mirrors all pointed at my navel, I began sending probes down various thought streams deep into the world of postmodernism. It’s a fun thing to do, although it often produces a bad headache, because this stuff rarely “makes sense.”

This particular day, I was toying with the idea of pomos trusting each other more than institutional expertise, which they would view as self-serving. If you run this out to the extreme, you can find some pretty idiotic concepts, but occasionally, you’ll run across one that has merit. This day, my mind was wrapping itself around an elaborate and searchable database of the medical experiences of everyday people. What worked? What didn’t work? What was it like? What would you do differently? This, I felt, would be a very valuable service, although two institutional groups wouldn’t like it: doctors and lawyers.

Imagine my surprise when my boss handed me the latest issue of Business 2.0 (how can they shut down this great magazine?) and I found a little blurb about a company called PatientsLikeMe. The company’s tag line is: “Patients helping patients live better every day.”

The site began in 2004 dedicated primarily to Lou Gehrig’s disease, ALS, but has grown to include MS, HIV/AIDS and many other ailments. Could this be the database I envisioned years ago?

At first, institutional medicine will embrace it. It’s a great place for research, and who knows what like-suffering patients can come up with? Then, it will become a genuine disruptor, and the American Medical Association will attempt to co-opt the site or otherwise bring it under its control. If the site’s owners resist, it will bring about the inevitable “practicing medicine without a license” accusation. PatientsLikeMe carries a robust disclaimer about this, but that won’t stop those who view the site’s content as a threat to their authority.

This Site Does Not Provide Medical Advice
ALL OF THE MATERIAL PROVIDE ON THE SITE, SUCH AS TEXT, TREATMENTS, DOSAGES, OUTCOMES, CHARTS, PATIENT PROFILES, GRAPHICS, PHOTOGRAPHS, IMAGES, ADVICE, MESSAGES, FORUM POSTINGS, AND ANY OTHER MATERIAL PROVIDE(D) ON THE SITE ARE FOR INFORMATIONAL PURPOSES ONLY AND ARE NOT A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE OR TREATMENT. ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH PROVIDER WITH ANY QUESTIONS YOU MAY HAVE REGARDING YOUR HEALTH. NEVER DISREGARD PROFESSIONAL MEDICAL ADVICE OR DELAY IN SEEKING IT BECAUSE OF SOMETHING YOU HAVE READ ON THIS SITE.

We live in such a nice, neat modernist world, where everything is organized to serve those in authority, who also control the paths leading to them. From the postmodernist’s perspective (and there’s a little of it in each of us), however, the hierarchy exists first to serve itself, and we pay the price. I’ve written before about a dear friend of mine who runs a drug and alcohol abuse facility in the South and finds the rules of the hierarchy to be increasingly anti-patient. He had to fire a man who had worked for him for 15 years and was the best family counselor he’d ever known. The guy had a gift for putting families back together, but what he didn’t have was a Master’s Degree in counseling, which was what the insurance companies required. Rather than lose his business, my friend was forced to terminate the guy and hire somebody “qualified” in the eyes of the institution.

PatientsLikeMe is positioned to overcome issues like this and further change the nature of authority in our increasingly postmodern world. Doctors will still be doctors, but the nature of their authority will be a far cry from absolute.

Comments

  1. Thanks for shining the spotlight on what PatientsLikeMe is doing. Our HIV community project is up and running and we are looking for Charter Members. If you are interested, please e-mail us:
    support@patientslikeme.com and let us know that you would like to join the HIV community.

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