The Robert Wood Johnson Foundation (RWJF), a Princeton, N.J.-based public health non-profit organization, has awarded the Cambridge, Mass.-based social platform provider, PatientsLikeMe, with a $1.9 million grant to create an open-participation research platform for the development of patient-centered health outcome measures, the organizations jointly announced.
The aim of the platform is to put patients at the center of the clinical research process, while giving researchers the ability to “pilot, deploy, share, and validate new ways to measure diseases.” The initiative will combine this platform will PatientsLikeMe’s patient network, looking 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.”
“This project is really exciting for us because it 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,” stated Brian Quinn, team director of RWJF’s Pioneer Portfolio, the team funding this project.
“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.”
The initiative will be open participation research initiative, with free access, as well as all instruments and items developed on the platform will be made openly available for free. The organizations’ say the researchers will able to get rapid feedback from patients to ensure that measures are relevant to their experience of disease.
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