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.

Over the past several years, numerous entities have made impressive strides in measuring and reporting provider performance data to detect where improvement is needed. Communities participating in the RWJF’s eight-year Aligning Forces for Quality (AF4Q) initiative developed local performance measurement systems that collected and reported process and outcomes data for practices and hospitals in their region. Local teams worked with patients, hospitals, physician groups, employers, and others to identify areas for improvement, test strategies, and share best practices—and these efforts led to quantifiable improvements in quality. Some alliances are now working to make data on costs publicly available. The lessons learned from AF4Q are being shared so others can replicate successful strategies.

There’s still much to learn about measuring and reporting performance data. Up to this point, performance data have typically only included clinical and administrative process and outcomes data, which measure what care is provided and what outcomes can be observed. Including information reported directly by patients themselves makes performance data more useful to consumers as they seek care and empowers patients, families, and clinicians to make health care more patient-centered.

A clinician may consider a treatment effective because he or she can observe reductions in medical symptoms during an office visit. But while clinically effective, the treatment may interfere with the patient’s day-to-day life—whether through extreme fatigue, depression, reduced sexual function, or impaired cognitive function. These are important factors that must not be overlooked or ignored. When examined alongside clinical and administrative performance data, patient-reported outcome measures help push health care improvement insights beyond the walls of the clinic so those measures encompass what is most meaningful to patients’ daily lives. For example, a patient-reported outcome measure would ask: To what extent are you able to carry out your everyday physical activities such as walking, climbing stairs, carrying groceries, or moving a chair?

Patient-reported outcome measures often fall into four general categories: health-related quality of life, symptoms and symptom burden, experience with care, and health behaviors (such as smoking and diet). The RWJF grant will work with patients to identify categories of outcomes that are meaningful to patients.

This all builds on the $1.9 million commitment that the RWJF made to PatientsLikeMe in 2013, along with other investments the foundation has made in measurement, transparency, and patient engagement and empowerment. Important efforts like this help ensure that health care performance data are relevant, useful, and actionable—and that they include patients’ perspectives.

Patients are an underused resource in health care. As our health care system moves toward linking performance and payment more closely, we cannot rely solely on clinical and administrative process and outcome measurements. In a Culture of Health, we must also take into account what matters most to patients about their health and health care, giving all people the opportunity to live the longest and healthiest possible life. This is a step in the right direction.