Patients Must be Part of Defining Quality and Increasing Value

We’re all frustrated by the high cost of US health care and a system that’s challenging for patients to navigate and does not consider patients’ goals and wishes. Both the public and private sectors are working hard to discover ways to transform the system by increasing value and becoming more responsive to patients’ needs and preferences. Change is happening on a number of different fronts, ranging from how insurers design coverage, to how we pay health professionals, to how hospitals are organized. These efforts typically require health care data so that opportunities to empower patients, improve care, and control costs can be identified.

With this in mind, the Robert Wood Johnson Foundation (RWJF) is providing PatientsLikeMe—an online patient network—with a $900,000 grant so as to extend a research platform to create or enhance performance measures that give patients a voice and put them at the center of the clinical research process. The grant will allow researchers to pilot, share, and validate new ways to measure patient-reported outcomes and use the PatientsLikeMe network, which includes longitudinal profiles for more than 400,000 patients. PatientsLikeMe will partner with the National Quality Forum to develop, test, and facilitate broader use of patient-reported outcome measures and ensure that they can be used alongside clinician-reported measures to assess clinical performance.