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Personalized Health Experiments and Rare Diseases

Posted by | 9:11am on Thursday, August 30, 2012
woman eating apple

Personalized health experiments would appear to be the next step in the evolution of the empowered patient 

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 PersonalExperiments.org, 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.

Investigating this topic, I found the video below where Eslick talks about his work with LAM. He describes some of the common challenges of working with a rare disorder: small patient populations, silos of clinical data and patient language that is disconnected from clinician language.

The best science under the circumstances
My favorite part of the video is near the end, when Eslick says (I’m paraphrasing): “How do I help an individual become more like a scientist—not to do the science we’re trained to do—but to do the best science they can under the circumstances. It’s these everyday experiments or behavioral modifications … that aren’t the subject of research, yet what patients need to know.”

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

(Image courtesy of Jessica Mullen on Flickr).

About Eileen O'Brien

Eileen has more than 16 years of digital healthcare marketing experience. She is an opinion leader on social media and biopharma, and has been invited to speak at industry conferences and quoted in publications.

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