PatientsLikeMe: Open Research Exchange

PatientsLikeMe: Open Research Exchange

While health outcome measures help doctors and other clinicians assess the effectiveness of care, those measures are typically developed in clinical settings, and collect information that is based on the needs and interests of researchers and the health care industry.

With support from RWJF, PatientsLikeMe is building a platform, called the Open Research Exchange, that engages patients in developing new measures—measures that capture and report on what is meaningful to patients in the real world. Using the platform, researchers will be able to work with patients to rapidly develop health outcome measures that better reflect patients’ experiences with a disease and how it is affecting their health and quality of life.

Using the Open Research Exchange, researchers and PatientsLikeMe members are collaborating to develop measures for hypertension (high blood pressure) and Type 2 diabetes, as well as tools to capture patient perspectives on end-of-life care and the burden of treatment regimens.

Access to the new platform is free, and all instruments and items developed on the platform will be made openly available for free, unlimited use and further development with no commercial restrictions.


By providing open access to this information and focusing on what is meaningful to patients, this initiative has the potential to accelerate discovery, advance medicine, and improve health.


PatientsLikeMe, Inc.

Cambridge, MA

Ben Heywood

Photo of Paul Tarini, Senior Program Officer for the Pioneer Portfolio

Paul Tarini, senior program officer

Measuring Health from the Patient's Perspective

This project will help us understand how patients truly experience disease and enable them to help us develop new treatments that better meet their needs,” says Paul Tarini, RWJF senior program officer.



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Real-World, Real-Time Data

The PatientsLikeMe platform is part of a larger RWJF effort to explore the usefulness, value, and limits of data generated by people in the real world and in real time.

With PatientsLikeMe, RWJF is interested to see what health care innovations emerge when researchers and clinicians focus on data that is developed by patients in the real world, where they spend most of their time, as opposed to controlled clinical settings.

PatientsLikeMe on Pioneering Ideas

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...In WIRED:  "PatientsLikeMe’s new platform could prove to be the most legitimately useful social app yet built."

...In Forbes: "Social network that is producing some of the most compelling clinical data the health care industry has ever seen."

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