Improving Patient-Reported Measurement in Oncology Value-Based Care

Policymakers are increasingly focusing on the patient experience to improve the quality and value of care, especially in oncology accountable care, but many challenges remain. To that end, a recent report delves into the current status of patient-reported measures and outcomes and makes recommendations for the future.

The National Pharmaceutical Council (NPC) and Discern Health, which conducted the analysis, created the 76-page report, “Improving Patient-reported Measures in Oncology” with assistance from the Duke-Margolis Center for Health Policy and the Cancer Outcomes Research Program, UNC Lineberger Comprehensive Cancer Center.

The analysis looks at the available patient-reported measures (PRMs) and patient-reported performance measures (PR-PMs) in oncology, offers recommendations for filling in the gaps, and stresses the importance of patient input in accountable care. The authors said that PRMs capture patient-reported experiences and outcomes, while PR-PMs report the performance measures that come out of the PRMs and are used to assess performance over time through metrics used in value-based care (VBC).

Two forces are making this issue more imperative, the report said. First, treatment is becoming more personalized through emerging targeted therapies, so patient participation becomes even more important. At the same time, those emerging therapies tend to be more costly, so as payment shifts to VBC care arrangements, concerns about controlling the costs of specialty oncology drugs must be countered by incorporating meaningful PR-PMs into care, quality measurement, health services research, and value-based payment.

Last year, for example, the Medicare Evidence Development and Coverage Advisory Committee mostly endorsed including patient-reported outcomes in its national coverage analysis decision of chimeric antigen receptor (CAR) T therapy. Earlier this month, CMS released its proposal requiring patients to be enrolled in registries or trials in order to receive Medicare coverage.

During a webinar discussing the report, Mark McClellan, MD, PhD, noted the importance of the topic, given the extreme costs and clinical hurdles that patients with cancer face.

“Often they’re not getting the right treatment and support,” said McClellan, the head of Duke-Margolis, who previously led FDA and CMS. Supportive care may not be well-paid for by payers, he said.

Incorporating metrics during active treatment of cancer has been shown to improve outcomes, said Ethan Basch, MD, MSc, director of the Cancer Outcomes Research Program, UNC Lineberger Comprehensive Cancer Center. Using electronic patient-reported outcomes has been found to lead to better overall survival, fewer emergency department visits, better symptom management, improved clinician awareness of symptoms, and more.

The report makes several recommendations about improving oncology accountable care when payment is tied to PR-PMs that are both meaningful to patients and reliable indicators of provider performance:

• Patient and provider burden must be minimal
• Patients and caregivers are involved in decisions about quality measure development and use.
• The PRMs and PR-PMs represent the range of care phases and measure domains meaningful to patients with cancer.
• Providers have the resources needed to implement and use the PR and S&P RPMs.

The report also found some interesting gaps across care phases in PRMs and PR-PMs. Only 1 of the oncology-specific PRMs, and none of the PR-PMs, captures the population at risk face of care, meaning patient's health and experience early on; understanding this can help providers assess preventative care and avoid future complications. The report also found gaps in relation to socioeconomic status, caregiver burden, personalized medicine and care planning, and goal attainment.

In addition, few oncology specific PRMs and PR-PMs exist that are applicable to follow-up care. What does exist mostly focuses on end-of-life care. However, the survival rate for cancer is improving, and so improvement with in measures that capture the patient experience and outcomes as they transition from active treatment to survivorship are needed, the report says.

The report categorized the barriers that stakeholders identified to implementing PR-PMs in VBP oncology care:

• Meaningfulness
• Provider resources
• Validity and reliability
• Insufficient incentives
• Patient burden/survey fatigue
• Insufficient data
• Payer priority
• Skewed results
• Proxy risk reports
• Considered subjective

However, the report said policymakers and measure developers can use 5 strategies to improve the use and implementation of PR-PRMs by:

• Involving patients and caregivers throughout all aspects of the measures life cycle to ensure measures capture value
• Filling care phase and domain gaps in PRMs and PR-PMs
• Addressing methodological challenges
• Reducing provider and patient burden by standardizing and aligning use of PRMs and PR-PMs
• Supporting providers in PRM and PR-PM implementation