Open Research Exchange
Leveraging patient-reported outcome data to help patients in their everyday lives.
The Open Research Exchange aligns health outcome measures with patients’ experiences with a disease, to advance research and the patient experience.
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 based on the needs and interests of researchers and the health care industry.
In an effort to focus more on patients' experience with a disease, the Robert Wood Johnson Foundation supported and worked with PatientsLikeMe to develop the Open Research Exchange, a platform which engages patients in capturing and reporting data that is meaningful to patients in the real world.
Using the Open Research Exchange, researchers can work with patients to rapidly develop health outcome measures that better reflect patients' interests related to their health and quality of life.
Grants and Grant Programs
RWJF supports programs to help everyone in our nation have the opportunity to live healthier lives.
Program/InitiativeOpen Research Exchange
Developed by PatientsLikeMe with support from RWJF, the Open Research Exchange enables patients to share data to support research and improve the patient experience.
ReportFinding a Path to Affordable Health Care
December 12, 2014
The National Coalition on Health Care held a series of meetings to finalize a report on controlling health care costs, present its recommendations, and explore policy alternatives.
News ReleasePatientsLikeMe Invites Patients to Lead Research Projects On Open Research Exchange
March 27, 2014
New $2.4 Million Grant from the Robert Wood Johnson Foundation Supports Two Patient-Led Projects in 2014 to Develop, Test and Validate Patient-Reported Outcomes.
Creating an open-source online database of patient-reported outcome measures to help patients more accurately monitor their health, Phase 1
Wed Jan 02 00:00:00 EST 2013
Under this project, PatientsLikeMe (PLM) will design and develop an online, open-source platform for the creation, deployment, testing and analysis of novel, real-world, patient-reported outcome measures (PROs) that focus on patient-desired outcomes.
Creating an open-source online database of patient-reported outcome measures to help patients more accurately monitor their health, Phase 2
Fri Dec 06 00:00:00 EST 2013
This grant supports the second phase of PatientsLikeMe's effort to develop and deploy an online, open-source platform--the Open Research Exchange (ORE)--for the creation, deployment, testing, and analysis of novel, real-world measures of patient-reported outcomes (PROs) that focus on outcomes that are meaningful to patients.
Developing patient-reported outcome measures relevant and meaningful to patients
Mon Nov 02 00:00:00 EST 2015
This grant supports the establishment and dissemination of a model for efficient development of patient-reported outcome measures (PROMs) that are relevant and meaningful to patients. It builds on earlier Robert Wood Johnson Foundation (RWJF) investments in the PatientsLikeMe open-source platform--the Open Research Exchange (ORE)--for the creation, deployment, testing, and analysis of patient-reported outcomes.