Learn About Personalized Health Experiments For Rare Diseases at

September 7, 2012

As I began reading the paper “Personalized Health Experiments to Optimize Well-Being and Enable Scientific Discovery” by Ian Eslick, I started thinking of the applications for rare diseases. Then, halfway through, the author (a PhD candidate at the MIT Media Laboratory) mentions his work with the rare disorder LAM, or lymphangioleiomyomatosis.

The paper notes that increasing numbers of Americans rely on online patient-generated content to help make health decisions. We know social media is an essential tool for patients (and families) with rare diseases for which few or no clinical studies have been performed.

Eslick writes, “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 will enable patient communities to convert anecdotes into structured self-experiments that apply to their daily lives. A self-experiment, a sub-type of the single-subject (N-of-1) trial, can quantify the effectiveness of a lifestyle intervention on one patient … Unusual interventions that succeed over many trials become evidence to motivate future clinical research.”

I like this idea of patients taking research into their own hands to see if they can improve their symptoms with lifestyle interventions. And doing it in a controlled and methodical manner. Eslick is part of the team that created the site, which facilitates this. Personalized health experiments would appear to be the next step in the evolution of the empowered patient and take participatory medicine to a whole new level. It makes sense that in the rare disease space where we have patient-initiated research that we should also have patient-conducted research.

I will be watching Eslick’s research with interest as it moves forward. What do you think about the idea of personalized health experiments?

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