NPC Responses to NQF’s request for comments on the Patient-Reported Outcomes Draft Recommendations Report
NPC’s comments reflect formatted responses to specific questions posed by the National Quality Forum.
General Comments
NPC’s comments draw from our 2019 white paper with Discern Health, Improving Patient-reported Measures in Oncology, which assessed the Patient-reported Outcomes Measure (PROM) and Patient-reported Outcome-based Performance Measure (PRO-PM) landscape and developed recommendations based on a landscape scan/gap analysis, stakeholder interviews and roundtable convening. We cited NQF’s PRO work when defining measure domains and exploring implementation barriers. The paper focuses on oncology but is pertinent to the broader PROM landscape.
Though PROs, PROMs and PRO-PMs have become common terms, they may limit thinking. We recommend more inclusive terminology: “patient-reported measures” (PRMs) and “patient-reported performance measures” (PR-PMs) to capture measures beyond outcomes, such as patient experience, patient attributes (e.g., social support) and patient reports on care processes. Framing measures exclusively in terms of outcomes may miss meaningful concepts. PRM and PR-PM better reflect NQF’s experience with care domains and reinforce the importance of measuring patient perspectives for care management and monitoring. For example, a provider-reported measure of shared decision-making (SDM) does not reveal whether patients felt like informed partners in the decision-making process.
We support the recommendation to consider patient outcomes beyond health-related quality of life and functional status, but we suggest adding domains to capture socioeconomic status and multiple facets of patient experience.
Our white paper outlines 14 domains in two categories:
The Quality of Life category includes four NQF domains: symptoms and symptom burden, physical functional status, psychosocial and cognitive status and health behaviors/self-management. We also use the domain socioeconomic status, which includes financial insecurity. This encourages people selecting PRMs to consider financial burdens and help clinicians identify risks that may impact other patient outcomes.
The Experience of Care category includes nine domains: clinical processes, satisfaction, access to care, care coordination, personalized medicine and care planning, patient engagement and activation, SDM, care concordance/goal attainment and caregiver experience/burden. Per our research, these are meaningfully different concepts and should be considered when selecting PRMs, especially for care planning and monitoring.
What are perspectives or experiences with incentivizing patients to complete and participate in PROMs?
Interviews with patients and providers during our 2019 white paper research revealed that patients are often willing to complete PRMs if they know how the data will be used in their own care or believe it will benefit others. Completing PRMs does add burden, especially for patients with complex care needs and frequent encounters with the health care system. We agree that educating patients on the importance of completing PRMs and reviewing relevant results with them during appointments is critical.
Creating PRMs that are short and relevant, thus reducing burden, also could be an incentive to complete PRMs. Involving patients, families and caregivers during development and implementation can help focus PRMs on questions patients find meaningful. Likewise, aligning PRMs across providers and programs and leveraging technologies as described in the report can ensure that patients are not asked duplicative or irrelevant questions.
We applaud the emphasis on patient engagement during measure selection and implementation, but we ask that NQF expand the patient engagement recommendation to include engagement of family members and other caregivers. This is especially critical because sometimes caregivers are asked to be surrogates to complete PRMs and caregivers also may experience burden from managing patient conditions or treatment.
What are perspectives on offering provider incentives to incorporate and complete PROMs [similar to meaningful use or Electronic Health Record (EHR) adoption]?
NPC supports NQF’s guidance related to implementation. We recommend tying these implementation considerations more explicitly to the need for adequate funding to support innovation.
Our 2019 white paper recommended that in order to improve PRMs in oncology, providers need to have the resources required to implement PRMs and PR-PMs. We appreciate that NQF provides implementation considerations related to stakeholder buy-in, data collection, workflow, interoperability of scores, EHR integration and return-on investment.
We agree with the recommendation that the Centers for Medicare and Medicaid Services (CMS) develop an incentive program to help providers implement PRMs. NQF also could urge CMS to more routinely require collection of PRM data for its Innovation Center models (as is proposed for the Oncology Care First model) and reward participating clinicians. We suggest that the recommendation for offering provider incentives also be extended to other payers or programs that might use techniques like an increased care management fee or per-member-per-month payment to defray the costs of implementation. This recommendation could be tied to the discussion on potential return on investment from downstream cost savings.
We suggest the report could more explicitly connect the need for funding to its recommendations regarding staff training and the various technical capabilities needed to implement multi-modal PRMs and alleviate burden (like EHR integration and Computer Adaptive Testing). Funding would also be needed to assess some of the attributes, such as psychometric soundness, and ensure that the PRMs are updated over time to stay current with science, accountability programs and the changing treatment landscape.
When selecting and implementing PROMs, are there systematic ways to weigh trade-offs and identify priorities beyond what is identified in the report?
We agree organizational measurement goals should drive attribute prioritization for PRO and PRM selection. While the report focuses on PROs and PRMs for care planning and monitoring, NQF could further discuss the variety of PRM uses. Prior NPC/Discern work identified a layered measurement approach to assess performance at the provider, system and external accountability levels: 1) PRMs may be used for clinical care at the provider level 2) PRMs and PR-PMs may be used for quality improvement at provider and system levels and 3) PR-PMs may be used for accountability at provider, system and population levels.
NQF could reference these uses when discussing goal setting and selection criteria. Though this report focuses on the first two uses, accountability should be considered during goal setting if it is intended for later use. Accountability programs may require PR-PMs based on specific PRMs; selecting different PRMs for the same concepts may lead to clinician and patient burden or implementation costs.
NPC appreciates the value of an Attribute Grid for PROM selection and examples of how to use it. We recommend NQF consider enhancing these attributes:
- Covers Desired PROs: We recommend including “and experiences” to “Based on the PRO selection process, the PROM(s) effectively measure the desired outcomes” to cover all domains. Using PRM terminology (see general comments) would capture patient experience measures.
- Psychometric Soundness: We recommend selecting PRMs validated for the population and setting in which they will be used when possible. Assessing psychometric soundness may require expert input and add to organization costs.
- Person-Centered: In addition to patients, we suggest including family members and caregivers in PRM development and/or selection.
- Cost: We suggest including considerations for incentives to mitigate financial burden of implementation. For example, participation in value-based programs or payer incentives might offset capital costs.
- Patient Burden: We agree that patient burden is a key consideration. We appreciate the Implementing PROMs discussion of educating the patient on the importance and value of PRMs and how the information will be used, as well as privacy and confidentiality considerations.
- Goal Attainment: We applaud the emphasis on this meaningful, if elusive, concept. We suggest that the report clarify the purpose and use of Goal Attainment as a separate attribute rather than merging with Covers Desired PROs. NQF could consider if the importance of this concept merits a separate domain.
- Fit-for-Purpose: We suggest including a new attribute of Fit-for-Purpose. A PRM could meet all of the attributes outlined, but not be appropriate for its intended use. Our white paper noted that the same PRMs may not be equally appropriate for clinical care, quality improvement and accountability.