“It’s hard to imagine evaluating a procedure such as a hip replacement without understanding whether the patient is able to walk farther or do more than before they had the surgery,” said Helen Burstin, the National Quality Forum’s (NQF) chief scientific officer. “That is the outcome that really matters to the patient, and it needs to be part of the quality equation.”

Since the healthcare field began measuring provider performance some 20 years ago, standardized measures have relied heavily on readily accessible claims data, and not patient accounts of their care. But change is underway. The federal government assesses patients’ experience with care in hospitals and other settings with measures based on Consumer Assessment of Healthcare Providers and Systems (CAHPS) surveys. The CAHPS® Hospital Survey has been used since 2006, and the Centers for Medicare & Medicaid Services (CMS) began publicly reporting data from the CAHPS Hospital Survey on the website, Hospital Compare, in 2008.

Clinical researchers have used PRO measures—validated tools to capture patient-reported physical, mental, and social well-being—for years, and providers have adopted some of these measures to help care for patients. But PRO-based quality measures have not been used to assess providers’ performance, in part because of the challenges such as capturing reliable, standardized data. As the healthcare system shifts to provide care that is more patient- and family-centered, and electronic health records evolve to capture more and better data, the measurement landscape is changing, and NQF is leading the way.

In 2013, NQF conducted foundational work to drive PROs into performance measurement. Building on NQF’s pathway and guiding principles to select sound PRO measures, today, NQF’s Measure Incubator™ is helping to advance the development of PRO performance measures.

Since the Measure Incubator launched a year ago, PRO performance measures have been identified by over 200 people involved in its workgroups as the leading measure gap. In a collaborative project funded by the Robert Wood Johnson Foundation, NQF and the patient network, PatientsLikeMe (PLM), are developing new models to put the patient voice at the center of the PRO measure development process. This new approach is being piloted in two PRO performance measures currently in development:

NQF’s Measure Incubator™ is facilitating the work of Minnesota Community Measurement (MNCM) to develop a PRO performance measure for chronic obstructive pulmonary disease (COPD), with funding from GlaxoSmithKline. As part of this work, PatientsLikeMe reached out to its patient network, which included 2,500 patients with COPD, to obtain feedback on MNCM’s draft measure concept. This approach amplified the voice of the patient on the developer’s workgroup.

PatientsLikeMe is also helping to strengthen the patient voice for another Measure Incubator™ project focused on the development of PRO performance measure for patients with multiple sclerosis (MS). Few quality measures exist for this disease of the central nervous system that afflicts hundreds of thousands of Americans. In collaboration with NQF, PatientsLikeMe reached out to patients with MS in its community for their feedback on the MS symptoms of greatest consequence to patients.

The results of both the COPD and MS outreach efforts were discussed at a recent Measure Incubator strategy session, funded by Biogen, and including experts in PRO research, measure development, patients, providers, and others to help identify an MS PRO performance measure concept for incubation.

In October 2016, NQF endorsed 24 new PRO performance measures reviewed by the Person and Family Centered Care Committee, including measures that assess patients’ and family members’ experience with a nursing home stay and the discharge process, measures assessing the use of shared decision making prior to treatment, as well as a measure to assess patients’ experience with home and community-based services. NQF also endorsed nine new PRO performance measures reviewed by the Palliative and End-of-Life Care Committee, including measures that assess the experiences of hospice patients and their primary caregivers as well as patients’ levels of pain at the end of life.

NQFs efforts will continue to catalyze the use of PROs in performance measurement.

Meanwhile, the federal government is underscoring the importance of patient-centric, value-based care. PROs are a high priority in CMS’s Quality Measure Development Plan, the strategic framework for clinician quality measure development to support the Merit-Based Incentive Payment System and advanced alternative payment models.