BusinessWeek has an article in its latest issue about patients banding together on the internet to take treatment into their own hands. While there are certainly issues with self-empowered care, I can’t help but think this is absolutely the future of medicine.
Among the examples BW cited was a case where 250 ALS sufferers recreated a small clinical trial using lithium to treat ALS symptoms. The patients communicated with each other on a social network, PatientsLikeMe, followed the recommended dosages individually, and then shared their vital signs and symptoms in an online spreadsheet. While BW acknowledges that this would never meet “rigorous scientific standards,” the self-initiated study was five time larger than the only other one that had been done on the subject, and it showed statistically significant evidence that Lithium is not an effective treatment.
I’ve written before about advances in medical technology solving the health care cost issue in the long run, but this type of distributed knowledge and treatment is something that has enormous potential right now.
The technology world of course is already used to this type of approach. Veritocracy is built on a foundation of open source software. While we have hired expert consultants when absolutely essential, the majority of the time when we have problems, we find answers from other developers using the same technologies in online forums and mailing lists.
One of the biggest barriers to this type of distributed knowledge sharing in the medical world is the rigid control placed on medical professionals, as well as drug and medical technology companies. It’s legally risky for a medical expert to dispense advice to strangers online, and it’s completely illegal for patients to access most medical treatments without a doctor’s supervision and prescription.
While there’s an argument to be made that people need protection from themselves, in many cases these well-intentioned, rigid rules increase the cost of medicine by several orders of magnitude. The cost of an FDA-approved medical study can be millions of dollars. The cost of seeing and consulting a doctor can be hundreds of dollars. While both may serve specific purposes, limiting all medical progress to these methods is certainly retarding progress and increasing overall costs.
Of equal importance, the emphasis on “certified” care, sometimes even inhibits optimal treatment. Case in point, a close family member of mine has suffered from a chronic illness for many years. Despite consulting several top doctors that specialize in treating the illness, no one was able to treat his debilitating symptom. Last year, I sat down and decided to do my own research and see what I could find. Sure enough, after several hours of browsing forums, I found many others suffering from similar issues. More importantly, they had found a non-conventional solution. Within a month of trying the recommendation of these fellow patients, this family member saw an enormous improvement.
These results are not abnormal. More and more patients are taking treatment into their own hands, often finding far better solutions than their doctors had ever offered. In some cases, it has saved their lives.
The point is that like all knowledge, medical information and treatments are evolving at such a rapid and exponential pace that most doctors simply cannot keep tabs of it all. The Internet has exponentially increased the availability, access, and speed of knowledge and information. It’s time we start using its power to do the same for medicine.
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