PatientsLikeMe receives grant to create open-participation research platform

A part of a new open-science initiative that puts patients at the center of clinical research process, the new platform will allow researchers to pilot, deploy, share, and authenticate new methods to measure diseases.

The new platform will be connected with the PatientsLikeMe patient network and will help researchers to develop health outcome measures that will reflect patients’ experiences with a disease, besides studying and reviewing their health and quality of life.

RWJF’s Pioneer Portfolio team director Brian Quinn said this project focuses on data that is developed by patients in the real world, where they spend most of their time, as opposed to controlled clinical settings.

"We believe it has the potential to help researchers better understand the course of disease and open up important paths for the development of new therapies. We’re eager to see what medical revelations will emerge when researchers focus first on patients’ needs and concerns, and openly collaborate with patients and each other," Quinn added.

PatientsLikeMe is an established network for patients who want to monitor their health, improve their outcomes, and contribute to medical research and discovery. Almost 200,000 patients, representing more than 1,500 diseases have created longitudinal records centered around their health outcomes.

With this platform, researchers can quickly attract PatientsLikeMe members to their studies, track the progress of newly developed measurements, and export data for analysis. On the other hand, patients too can offer their rapid feedback to ensure that measures are relevant to their experience of disease.

In the open-participation research initiative, access to the new platform will be free, and all instruments and items developed on the platform will be made openly available for free, unlimited use.