Online network PatientsLikeMe has been awarded a $1.9 million grant from the Robert Wood Johnson Foundation to create what the organizations touts as the "world's first open-participation research platform for the development of patient-centered health outcome measures."
The platform is part of a new open-science initiative that puts patients at the center of clinical research process in order to make it possible for researchers to pilot, deploy, share and validate new ways to measure diseases. The initiative will be spotlighted today at TED2013 in a presentation by Paul Wicks, PatientsLikeMe's research director and a new TED Fellow.
Health outcome measures are typically developed by clinicians and researchers, and collect information that meet their needs. Linked with the PatientsLikeMe patient network, the new platform is intended 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.
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"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, team director of RWJF's Pioneer Portfolio, in a news release. "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."
PatientsLikeMe is an established network for patients who want to monitor their health, improve their outcomes and contribute to medical research and discovery. Nearly 200,000 patients, representing more than 1,500 diseases, have created longitudinal records centered on their health outcomes, according to network executives.
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Using the platform, researchers aim 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 rapid feedback to ensure that measures are relevant to their experience of disease.
In this open-participation research initiative, 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. PatientsLikeMe is also contributing the dozens of existing instruments it has developed. Charitable users will receive discounted access to data compiled by PatientsLikeMe for the initiative.
"Measurement is the basis of knowledge," said Jamie Heywood, co-founder and chairman of PatientsLikeMe, in the news release. "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."