Measuring What Matters to Patients: Innovations in Integrating the Patient Experience into Development of Meaningful Performance Measures 

To make a meaningful shift to patient-centeredness, quality measurement needs to focus on patient priorities. This can only be accomplished through broad engagement of patients during measure development and implementation. The Robert Wood Johnson Foundation (RWJF) funded PatientsLikeMe® in partnership with the National Quality Forum (NQF) to evaluate the novel approach of using online patient-reported data to inform the development and refinement of patient-reported outcome performance measures (PRO-PMs). This work builds upon NQF’s previous PRO-PM research and PatientsLikeMe’s online patient community-based platform research. The findings of this work confirm that patient-reported outcomes are integral in developing meaningful quality measures and suggest that in aggregate, patient-reported outcomes can address a series of measure development challenges.