Nearly one quarter of US adults read patient-generated health information found on blogs, forums and social media; many say they use this information to influence everyday health decisions. Topics of discussion in online forums are often poorly-addressed by existing, high-quality clinical research, so patient’s anecdotal experiences provide the only evidence. No method exists to help patients use this evidence to make decisions about their own care. My research aims to bridge the massive gap between clinical research and anecdotal evidence by putting the tools of science into the hands of patients.
Specifically, I am enabling patient communities to convert anecdotes into structured self-experiments that apply to their daily lives. The self-experiment, a type of single-subject (N-of-1) trial, can quantify the effectiveness of a lifestyle intervention for one patient. The patient’s challenge is deciding which of many possible experiments to try given the information available. A recommender system will aggregate experimental outcomes and background information from many patients to recommend experiments for each individual. Unusual interventions that succeed over many trials become evidence to motivate future clinical research.
I’m sharing the current status of my proposal to invite feedback and discussion.
Frumious Abstractions 
I just ran across a great article from fellow-traveler Matthew Cornell on this topic: http://www.matthewcornell.org/blog/2011/5/16/personal-development-self-experiments-and-the-future-of-sear.html
I just read about your work in December’s Discover magazine. How would a psoriasis patient volunteer to take part in your study?
Hi Faith. I will be announcing a prototype of the system I discuss in my proposal on this blog in the next few weeks. You’ll be able to use it directly. I’m very interested in psoriasis as a condition as so many people find relief from lifestyle interventions, and yet little is known about many of them.
Just checking in…the article in Discover has got me trying some health self tracking already. I’m prepping myself to get into the more conscious space of tracking so I’m ready for your site. You are having a positive impact even before getting started with the experimental program. ;-)Thanks for the work you do!Faith Wallis
Your work is tackling the exact problem ur community (and specifically our patient run website) is trying to tackle – how to turn patient anecdotal data into useable data … in our case, capturing the symptoms and effective treatments for an incredibly complex neuroendocrineimmune disorder that is still poorly defined. We have years worth of data already in our forums and we’re creating databases to try to capture additional data in a more structured format-we’d love to collaborate and help both your dissertation and the ME/CFS/NEI patient community at the same time.