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 RWJF, PatientsLikeMe is building a platform, called the Open Research Exchange, that engages patients in developing new measures—measures that capture and report on what is meaningful to patients in the real world. Using the platform, researchers will be able to work with patients 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.
Using the Open Research Exchange, researchers and PatientsLikeMe members are collaborating to develop measures for hypertension (high blood pressure) and Type 2 diabetes, as well as tools to capture patient perspectives on end-of-life care and the burden of treatment regimens.
Access to the new platform is 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.