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 that is based on the needs and interests of researchers and the health care industry.
With support from Pioneer, PatientsLikeMe will build a platform that engages patients in the development of patient-reported health outcome measures—measures that matter to patients in the real world. Using the platform, researchers will be able to work with PatientsLikeMe members to rapidly develop health outcome measures that better reflect patients’ experiences with a disease and how it is affecting their health and quality of life.
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.
By providing open access to this information and focusing on what is meaningful to patients, this initiative has the potential to accelerate discovery, advance medicine, and improve health.
Paul Tarini, senior program officer
This project will help us understand how patients truly experience disease and enable them to help us develop new treatments that better meet their needs,” says Paul Tarini, senior program officer for the Pioneer Portfolio.
The number of people in the @PatientsLikeMe network
The PatientsLikeMe platform is part of a larger effort by Pioneer to explore the usefulness, value, and limits of data generated by people in the real world and in real time.
“We’re interested to see what health care innovations emerge when researchers and clinicians focus on data that is developed by patients in the real world, where they spend most of their time, as opposed to controlled clinical settings,” says Brian Quinn, the Pioneer Portfolio’s team director.
Pioneering Ideas: PatientsLikeMe Project Pioneers Use of Outcomes Data That Are Meaningful To Patients
Press Release: RWJF Awards $1.9 Million Grant to PatientsLikeMe
...In WIRED: "PatientsLikeMe’s new platform could prove to be the most legitimately useful social app yet built."
...In Forbes: "Social network that is producing some of the most compelling clinical data the health care industry has ever seen."
