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, called the Open Research Exchange, 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.