Nearly 200,000 patients representing more than 1,500 diseases use PatientsLikeMe to monitor their health, improve their outcomes, and contribute to medical research and discovery. Using data from the PatientsLikeMe network, the new platform will enable clinicians and researchers to develop health outcome measures that better reflect a patient's experience with 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," said Brian Quinn, director of RWJF's Pioneer Portfolio, which is funding the 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."
Through the platform, researchers will work to attract PatientsLikeMe members to their studies, track the progress of newly developed measurements, and export data for analysis. Patients will be able to offer their feedback to ensure that measures are relevant to their experience of disease. All instruments and items developed for the platform will be made available to the public for free.
"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 For too long, there have been restrictions placed by copyright and weak and out-of-date tools to measure a patient's experience with disease," said PatientsLikeMe co-founder and chair Jamie Heywood. "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."