Patients Take Active Role in Clinical Research

April 26, 2011
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I was pleased to see one of my favorite companies, PatientsLikeMe, win such wide attention yesterday for its role in an observational study of lithium for ALS. The study, published in Nature Biotechnology, was noteworthy because it used the PatientsLikeMe network of patients for the research. As a result the study was designed, launched, analyzed and reported in nine months compared to two years or so for a typical trial approach.

I was pleased to see one of my favorite companies, PatientsLikeMe, win such wide attention yesterday for its role in an observational study of lithium for ALS. The study, published in Nature Biotechnology, was noteworthy because it used the PatientsLikeMe network of patients for the research. As a result the study was designed, launched, analyzed and reported in nine months compared to two years or so for a typical trial approach. The difference between nine months and two years is huge for ALS patients, whose median time from diagnosis to death is 2-5 years.

The paper and articles reporting on it noted the value of patients taking an active role in getting the study going, but I’m not sure the medical and scientific community is quite ready to grant patients the broader role in clinical trials that they deserve. Many patients with life-threatening illnesses such as ALS are extremely well informed and motivated to make progress against their disease. Researchers and clinicians don’t always share the same degree of focus or urgency; even when they do they don’t have the patient perspective.

HIV patients, working through the Forum for Collaborative HIV Research and other channels, has demonstrated the highly productive role that patients can play in study design, patient recruitment and retention, interpretation and dissemination of results. They also do a great job of reminding researchers and trial sponsors about the urgency and seriousness of the work.

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I had an email exchange with PatientsLikeMe president Ben Heywood on this topic, and he seems to agree with me. He wrote:

“In the long run, capturing the experiments run everyday by physicians and their patients can significantly improve the overall understanding of treatments and disease.  There is tremendous value in reconnecting researchers to the patients they are working hard to serve by changing the norm from doing research ON patients to doing research WITH patients.”

As researchers and patients gain experience working in true collaboration I’m confident we’ll see quality improve and drug development accelerate.

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