Grant to Fund Patient-Sourced Health Outcome Measures

Paul Wicks (PatientsLikeMe.com)

PatientsLikeMe, a health data-sharing network and platform in Cambridge, Massachusetts, received a $1.9 million grant from the Robert Wood Johnson Foundation to establish a system for involving patients in the development of health outcome measures. Paul Wicks, PatientsLikeMe’s research director (pictured right), is scheduled to describe the project today at the TED2013 conference in Long Beach, California.

The organization says the project is part of a new open-science initiative that aims to increase participation by patients in the clinical research process and allow researchers to test, deploy, and validate new ways to measure diseases. The PatientsLikeMe patient network is expected to help researchers develop health outcome measures that better reflect patients’ experiences with a disease, and assess health and quality of life in ways that matter to patients.

The organization plans to use the platform to attract PatientsLikeMe members to the researchers’ studies, track the progress of newly developed measurements, and export data for analysis. Patients will also be able to offer feedback to ensure that measures are relevant to their experience of disease. Access to the new platform will be free, says PatientsLikeMe, and all instruments and analytics developed on the platform will be made available for free, unlimited use and further development with no commercial restrictions.

PatientsLikeMe previously took part in a crowd-sourced observational study testing the compound lithium carbonate to treat  amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, in an attempt to replicate findings from a small 2008 study showing the compound could slow the advance of ALS. While the findings did not replicate the previous study’s results, the organization says the experience showed crowd-sourcing could provide a faster and less-expensive alternative to observational studies conducted with a clinical trial.

The organization hopes the project will fill a gap in disease metrics and analytics. “Measurement is the basis of knowledge,” says Jamie Heywood, co-founder and chair of PatientsLikeMe.  “For too long, there have been restrictions placed by copyright and weak and out-of-date tools to measure a patient’s experience with disease.”

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