Loud and Clear: Key Takeaways from a Webinar on “Amplifying the Patient Voice” in Quality Measurement

In a Feb. 28 webinar from NPC and Discern Health, a group of diverse speakers discussed policy solutions for improving patient-reported measures in oncology value-based programs, along with a white paper on the topic.

By: Discern Health

The National Pharmaceutical Council (NPC) and Discern Health held a webinar on Feb. 28, 2019, to explore “Policy Solutions for Improving Patient-Reported Measures in Oncology Value-Based Payment Programs.” This summary describes key takeaways from the webinar discussion related to:

  • defining “value” from patients’ perspectives;
  • engaging patients throughout development, implementation, evaluation, and alignment of measures;
  • informing patients and feedback loops;
  • improving financial incentives;
  • forging public-private partnerships;
  • establishing infrastructure support;
  • aligning measures across programs; and
  • providing funding for initiatives.


The shift to value-based care has been accompanied by a need for quality measures that are meaningful and capture value for multiple stakeholders, especially patients. Policymakers and others who set priorities for performance measurement are increasingly focusing on patient-reported measures of outcomes and experience as key to capturing patient perspectives and ensuring that care is patient-centered, particularly for oncology.

In 2018, NPC partnered with Discern to assess the current landscape of patient-reported measures (PRMs) and patient-reported performance measures (PR-PMs) for oncology and identify strategies for developing and/or enhancing measures for use in accountable care programs. Last month, NPC and Discern published a white paper, Improving Patient-reported Measures in Oncology, that presents findings from research, interviews with subject matter experts, and a multi-stakeholder roundtable discussion, and offers recommendations for improving PRMs in oncology value-based payment programs.

About the Webinar

Led by the co-chairs of the roundtable, Drs. Mark McClellan, Director, Duke-Margolis Center for Health Policy, and Ethan Basch, Director, Cancer Outcomes Research Program, UNC Lineberger Comprehensive Cancer Center, the webinar provided an overview of findings described in the white paper and explored action steps necessary to pursue key policy recommendations and bring the patient voice into oncology value-based payment programs.

In addition to Drs. McClellan and Basch, the diverse panel of webinar speakers included:

Key Takeaways

Policymakers, providers, measure developers, and other stakeholders are working to increase the use of PR-PMs in accountability programs for oncology. "Without patient-reported data, we have inadequate information about patient status, and you can't really characterize the value of the care we're delivering," said Dr. Basch. Stakeholders recognize the importance of PRMs for oncology; however, challenges remain for developing and implementing meaningful measures. In this webinar, the speakers discussed action steps for improving patient-reported oncology measures by better incorporating the patient voice in value-based care.

Key takeaways from the discussion included:

  • Defining “value” from patients’ perspectives. The definition of health care value varies by individual. The way that program designers and policymakers define value may not always be meaningful to patients, caregivers, and providers. Therefore, the first step to patient-centered measurement is understanding what is important and valuable to patients.
  • Engaging patients throughout measure development, implementation, evaluation, and alignment. To ensure that PRMs and PR-PMs used for clinical care, quality improvement, and accountability are meaningful to patients and caregivers, measure developers and program designers should involve patients and caregivers at every phase of the measurement life cycle. Due to the diversity inherent among the oncology patient population, a single patient cannot represent the entire population. Patients with distinct characteristics related to their conditions and sociodemographic statuses should be involved to improve the measurement process.
  • Informing patients and feedback loops. Patients can receive 1-4 surveys per appointment, and in most cases, they never know what happens to the information. When surveying patients, providers and measure implementers should employ processes to inform patients about the purpose of the survey and how the information will be used, provide appropriate instructions on completing the survey, and give feedback on what was learned from the data.
  • Improving financial incentives. Although value-based payment programs increasingly incentivize providers to use PRMs, current incentives are not sufficient to offset the costs of PRM implementation and administration and reporting of PR-PMs. Better financial incentives for providers may alleviate the administrative burden and support providers in delivering care that is more patient-centered.
  • Forging public-private partnerships. Stakeholders from both the public and private sectors should come together and collaborate to increase the use of PR-PMs in accountability programs for oncology. Such partnerships may require a national-level convening of stakeholders involved in and impacted by oncology quality measurement.
  • Establishing necessary infrastructure support. After meaningful, reliable, and valid PRMs are developed, proper infrastructure must be established to implement and administer the measures. Information technology (IT) is a critical component of the infrastructure necessary to enable providers to adopt PR-PMs.
  • Aligning efforts to reduce patient and provider burden. Several panelists emphasized the need for consistency in the type of data being collected across organizations. Alignment in the use of PRMs and PR-PMs within and across organizations and purposes would reduce patient and provider burden and facilitate establishing benchmarks, comparing providers, and measuring progress over time.
  • Providing funding for initiatives. Policymakers and payers should consider training, grants, and additional incentives to help fund development, implementation, evaluation, and alignment of PR-PMs for value-based payment programs. Funding should be allocated to support patient engagement throughout the measurement life cycle.

While many stakeholders recognize gaps in measurement and barriers to implementation of PRMs in oncology, the journey to improvement will require time and resources. "We are in the early days of this work in many ways,” Dr. McClellan observed, “but there is a very strong foundation to build on with specific next steps for policymakers around actionability and alignment that will provide momentum for something that everyone wants and is increasingly technically possible.” The strategies and tactics discussed during the webinar and in the white paper offer a good starting point to help policymakers and other stakeholders amplify the patient voice in value-based payment for oncology.

A recording of the webinar can be viewed here. The white paper, Improving Patient-reported Measures in Oncology, is posted here. Printed copies will be available at the NPC booth at the 2019 National Quality Forum (NQF) Annual Conference held in Washington, DC, from March 24-26.

Looking for additional information about quality measurement? View two previous white papers from NPC and Discern, Accountable Care Measures for High-Cost Specialty Care and Innovative Treatment, and Improving Oncology Quality Measurement in Accountable Care.