We the People… can conduct research?

The recent brou-ha-ha between the FDA and the direct-to-consumer, genetic testing company 23andMe (there’s a plethora of postings out there, but I found this one particularly entertaining: http://www.theverge.com/2013/12/3/5171126/can-23andme-survive-the-fda) made me think about the larger implications of eHealth.

The promise of Digital Health is truly Open Source Data. Whether it’s exploring one’s personal genome through 23andMe, or gaining access to Electronic Medical Records, the crux of it is this: transferring ownership of medical information from its traditional Gatekeepers, the Doctors, to the patients.

This movement is made manifest in the self-tracking phenomena (see http://quantifiedself.com/). Wearable sensors are becoming ubiquitous, be they FitBit, Jawbone UP, or Nike Fuel. They’re marking our steps, monitoring our food, measuring the quality of our sleep, and they’re multiplying exponentially. It’s predicted that, by 2017, the number of wearable health and fitness sensors will increase by 552% (http://mobihealthnews.com/22752/prediction-wearables-to-lead-the-515-million-sensors-to-ship-in-2017/).

But Sean Ahrens has a vision that goes well beyond simply Quantifying his Self. He asked, “What if we could learn from the collective experience of patients everywhere?” Sean Ahrens is a Crohn’s patient and the founder of Crohnology.com (https://Crohnology.com/). …and he’s harnessing the power of the people to do research.

Individuals living with chronic medical conditions, like Crohn’s disease, generate a vast amount of data about their health every second of every day, but it’s usually lost.

Crohnology.com is a platform for documenting and preserving the experiences of patients from all over the world who are suffering from Crohn’s disease, an incurable, autoimmune disease that causes inflammation throughout the digestive tract.

On Crohnology.com, millions of patients have shared health and treatment information about what works (and doesn’t work) in the wild. This means that newly diagnosed patients no longer have to feel isolated, unsure, and afraid. Through Crohnology.com, they can now find others with the same condition in their city, learn about what’s most effective for what kinds of patients, and record their progress as they, themselves, try new approaches.

Sean believes that, if we harness our aggregated knowledge, we, the people, can work to advance science. …but Sean isn’t stingy. He also invites researchers to partake of this unprecedented amount of data from patients when they’re outside their Doctor’s office.

So I dare the medical establishment. As a matter of fact, I double dare you to turn the medical model on its head. Doctors, step away from your Gates, give the medical information back to your patients, and watch the world change.