PatientsLikeMe awarded $1.9m grant to create first open research platform

Hannah Blake

pharmaphorum

The Robert Wood Johnson Foundation has awarded PatientsLikeMe with a US $1.9 million grant so it can create the world’s first open-participation research platform, for the development of patient-centered health outcome measures.

The new platform aims to help researchers develop health outcome measures that better reflect patients’ experiences with a disease, and access 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. 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.”

Brian Quinn, team director of RWJF’s Pioneer Portfolio, the team funding this project.

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 and further development with no commercial restrictions.

“Measurement is the basis of knowledge. For too long, there have been restrictions placed by copyright and weak and out-of-date tools to measure a patient’s experience with disease. Patients, researchers, and clinicians working together to iterate and learn about the holistic journey of each condition and health itself is a critical step toward transforming care and discovery so that they truly serve the patient.”

Jamie Heywood, co-founder and chairman of PatientsLikeMe.

The Robert Wood Johnson Foundation is the United States’ largest philanthropy that focuses exclusively on health and healthcare issues.