The National Quality Forum (NQF) published this paper in 2013 regarding the use patient-reported outcomes (PROs) for health care performance measurement. PROs are defined as “any report of the status of a patient’s (or person’s) health condition, health behavior, or experience with healthcare that comes directly from the patient, without interpretation of the patient’s response by a clinician or anyone else.” PRO measures (PROMs) have been developed to measure health-related quality of life, functional status, symptoms and symptom burden, health behaviors, and patient experience of care. The challenge is how best to use such measures, which are by definition unfiltered by healthcare providers, to appropriately measure provider performance. NQF, with funding from the U.S. Department of Health and Human Services, brought together a diverse set of stakeholders who could facilitate the groundwork for developing, testing, endorsing, and implementing PRO performance measures (PRO-PMs) by selecting among available PROMs.
A PRO-PM is based on PROM data aggregated for an entity deemed as accountable for the quality of care or services delivered. Such entities can include long-term support services providers, hospitals, physician practices, or accountable care organizations. NQF would endorse PRO-PMs for purposes of performance improvement and accountability.
Using PROMs is viewed as an important step toward engaging patients, health professionals, and other entities in creating a person-centered health system.Use of PROMs can also facilitate shared decisionmaking, another strategy for engaging patients. As patients become more engaged in their care by providing systematic feedback on outcomes such as their functional or health status, the flow of information between clinicians and patients must be bi-directional. This may mean that health professionals interpret PROM information back to their patients; it may mean that mechanisms are established to give patients their own information directly.
As PROMs are collected more routinely at the point of care and are embedded into workflows, it becomes essential to ensure this information is of value to the patient and will be used in their care. Results should be shared and appropriate intervention taken (or not) based on the best available evidence and informed by patient’s preferences and treatment goals. When collecting individual level data through the use of PROMs, special consideration must be given to the burden of data collection, which ideally will be offset by the patient’s assessment of meaningfulness.
Finally, the paper discusses a “pathway” for PROMs to be considered by NQF for endorsement. Patients (as broadly defined to include family members and caregivers, and consumers broadly) should be involved in identifying quality issues and outcomes that are meaningful to those receiving the healthcare and support services. If patients are involved at those steps, then PROM developers will have the information needed to demonstrate that the outcome is of value to patients. PROM developers also should identify evidence that an outcome is responsive to intervention prior to submission to NQF for endorsement.
NQF also published an issue brief summarizing its work on PRO-PMs.