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Patient Voices in Value-Based Cancer Care: Priorities for the Biden Administration

Authored by

Theresa Schmidt, MA1; Jacqlyn Riposo, MBA1; Tom Valuck, MD, JD1; Kimberly Westrich, MA2;
Ethan Basch, MD, MSc3; Mark McClellan, MD, PhD4


1Discern Health, part of Real Chemistry, Baltimore, MD
2National Pharmaceutical Council, Washington, DC
3Cancer Outcomes Research Program, University of North Carolina Lineberger Comprehensive Cancer Center,
Chapel Hill, NC

4Duke-Margolis Center for Health Policy, Washington, DC


The research described in this article was funded by the National Pharmaceutical Council (NPC). Ms Schmidt, Ms Riposo, and Dr Valuck are employees of Discern Health, part of Real Chemistry. Discern is a consulting firm with many clients including life sciences, non-profit, payer, and provider organizations. Ms Westrich is an employee of NPC, an industry funded health policy research group that is not involved in lobbying or advocacy. Dr Basch reports grants from National Cancer Institute and Patient-Centered Outcomes Research Institute; fees from serving as a consultant on research projects at Memorial Sloan Kettering Cancer Center, Dana-Farber Cancer Institute, and Research Triangle Institute/CMS; and fees from serving as a scientific advisor to CareVive Systems, Sivan Healthcare, Navigating Cancer, and AstraZeneca. Dr McClellan is an independent director on the boards of Alignment Healthcare, Cigna,  Johnson & Johnson, and PrognomIQ; co-chairs the Guiding Committee for the Health Care Payment Learning and Action Network; and has received fees for serving as an advisor for Arsenal Capital Partners, Blackstone Life Sciences, and MITRE.


J Clin Pathways. 2021;7(3):60-63. doi:10.25270/jcp.2021.04.00002
Received January 20, 2021; accepted March 17, 2021.


The authors would like to acknowledge David Blaisdell, Palak Patel, and Brittany Perkins for their contributions to this article and NPC/Discern Health research on PRMs and PR-PMs in oncology.


Theresa Schmidt
1120 N. Charles St., Suite 200
Baltimore, MD 21201
Phone: (614) 440-8176
Fax: (410) 542-9990

Abstract: The Biden administration has an opportunity to prioritize patient perspectives in innovative value-based payment models for oncology by incorporating meaningful patient-reported measures (PRMs) and patient-reported performance measures (PR-PMs). We use previous research findings to explore recommendations for the Centers for Medicare & Medicaid Services (CMS) to look beyond prior oncology value-based payment (VBP) models. Recommendations include: (1) involving patients and caregivers during development and implementation; (2) selecting or developing PRMs and PR-PMs to fill gaps in measuring shared decision-making, health-related quality of life, and goal-concordant care; (3) reducing reporting burden through the use of validated, standardized measures; and (4) providing implementation support. Incorporating these recommendations into CMS oncology VBP models can help ensure these models improve care from the perspectives of patients and families.

Key Words: patient-reported measures, value-based payment, value-based care, oncology

President Biden’s campaign promise that “every American has a right to the peace of mind that comes with knowing they have access to affordable, quality health care” suggests that value-based care will be high on the priority list for the new administration.1 As the Centers for Medicare & Medicaid Services (CMS) moves forward with designing payment models to advance value-based care, incorporating patient-reported performance measures (PR-PMs) offers a way to recognize patient voices in defining value.

In 2016, the Center for Medicare and Medicaid Innovation (CMMI) launched the Oncology Care Model (OCM) at then Vice President Biden’s Cancer Moonshot Summit, announcing practice enrollment as one of the activities aligned with the goals of the Moonshot.2-4 Given President Biden’s historical focus on cancer and strong association with Affordable Care Act
reforms, the new administration is likely to pursue innovative payment models for oncology. This may occur as a transition from the OCM to the proposed Oncology Care First (OCF) model or another value-based payment (VBP) model. In whatever form a new model takes, listening to patient voices via
PR-PMs is crucial to ensure that patients receive high-value care.5

In this article, we draw from previous research findings to outline recommendations for CMS to elevate the patient perspective in cancer care under the Biden administration.

Opportunity to Elevate Patient Voices in a Future Oncology VBP Model

Patient-reported measures (PRMs) are tools that capture patients’ voices related to their care experiences and outcomes. PR-PMs translate PRM responses into metrics that can be used to assess and compare health care performance and track changes over time. Using PRMs in oncology care can lead to improved patient outcomes, including survival.6,7 Implementing PR-PMs in oncology VBP programs can ensure that the physical, financial, and psychological burdens experienced by cancer patients are included in the definition of and payment for value.

Our recent work to understand the use of PR-PMs in oncology VBP programs, including the OCM, found that only a small number of these measures are being used.8 The 2020 OCM model does not include any patient-reported outcome performance measures, but it does include a Patient-Reported Experience of Care measure calculated from a patient survey.9,10 This measure averages scores on one overall patient experience measure and four composite measures related to information, access, self-management, and communication. A “Shared Decision-Making” composite is also calculated from the survey questions but is not counted toward pay-for-performance because testing found it “not sufficiently reliable for benchmarking and payment purposes.”9 Shared decision-making is an important concept for stakeholders, as described below.

In 2019, CMMI proposed to expand the scope of the OCM in a new OCF model and requested feedback on the quality strategy.5 CMMI suggested that the OCF measure set could be the same as the measures currently used in OCM, asserting that these measures “represent the best way to assess high-quality care in oncology today.” However, the OCM measure set does not include key PR-PM concepts that stakeholders prioritized in our research8: health-related quality of life (HRQoL), care coordination, and goal-concordant care.

The OCF model was anticipated to begin in January 2021. However, due to the COVID-19 pandemic, CMMI extended the OCM through June 2022 and has not released additional information about the OCF.11 The delay in releasing a new oncology VBP model offers CMMI the chance to add measures that would bring patient voices into value-based cancer care. Under the new administration, CMMI should consider the following recommendations for enhancing oncology VBP models.

1. Include patients and caregivers throughout all phases of program development and implementation. Our research surfaced stakeholder concerns that when “value” is defined from the payer perspective, it may not capture the most meaningful priorities of patients and family caregivers.8 Physicians’ perceptions of which care processes and outcomes are most important may also differ from patients’ priorities. To ensure that VBP models incentivize value as defined by patients and consider the impact of measurement processes on patients, CMMI should involve patients and families in all phases of program and measure development, implementation, and evaluation. Because patient experiences, goals, and preferences may vary widely, the patient and caregiver participants engaged in development and beyond should reflect the diverse population of oncology patients.

2. Select or develop PRMs to fill gaps. CMMI should consider PR-PMs related to HRQoL, shared decision-making, and goal-concordant care in oncology VBP design:

  • Shared decision-making. Because different patients may have different priorities, which may change over time, VBP models should include shared decision-making measures to ensure that patients understand treatment risks and benefits. This discussion should expand beyond the impact on survival and physical symptoms to include considerations about the way treatment can impact quality of life and create burdens on patients and caregivers (eg, financial burden, the need for transportation, and potential for work disruption). Patients should be empowered to participate in making care decisions at the levels they prefer.
  • HRQoL. Cancer treatment often requires patients to make trade-offs between longer life and better quality of life. Measuring and reporting performance on PR-PMs related to quality of life can inform patient engagement in shared decision-making. For example, measuring symptoms and symptom burden (a component of HRQoL) can motivate and empower practices to better monitor and manage symptoms. Using PRMs to identify and respond to symptoms earlier also can lead to improvements in other patient outcomes, (eg, overall survival and improved quality of life) and reduced costs (eg, fewer emergency room visits and hospitalizations).6
  • Goal-concordant care. VBP models should include measures of goal-concordant care to hold practices accountable for considering patient values, preferences, and personalized goals during treatment.

CMMI should continue testing and refining the shared decision-making measure in the OCM so that this important concept can be included in a future pay-for-performance calculation. Additionally, our research identified three PR-PM concepts that relate to HRQoL and goal-concordant care.8 These are not currently measured in the OCM but should be considered for inclusion in emerging oncology accountability programs:

  1. HRQoL: symptoms interfered with daily activities;
  2. HRQoL: provider assessed patients for emotional or social status concerns and offered referral to treatment; and
  3. Goal-concordant care: patient goals and values were considered across cancer treatment processes.

CMMI should begin developing or testing relevant PRMs and PR-PMs while the next oncology VBP model is still being designed. Early action is important because the measure development process can take more than two years from conceptualization to implementation.12 CMMI should leverage measures that are already in development or use, such as the Purchaser Business Group on Health’s (PBGH) HRQoL and pain measures that are being funded through the Medicare Access and CHIP Reauthorization Act of 2015 (MACRA) or Minnesota Community Measurement’s (MNCM) cancer symptom control outcome measures for pain, nausea, and constipation.13,14

3. Promote the use of validated, standardized measures to reduce patient and practice reporting burden. Our research found that cancer patients feel burdened by the frequent requests to complete surveys related to their many interactions with the health care system.8 Duplicative surveys or irrelevant or complex questions exacerbate survey fatigue. Practices also experience burden from trying to integrate PRMs into clinical and administrative workflows, often to meet reporting requirements associated with participation in multiple accountability programs. CMMI can help address patient and practice burden by promoting alignment of measures across accountability programs, including with private payer programs.

CMMI proposed a new practice redesign element in the OCF that would require practices to report electronic patient-reported outcomes (ePRO) data. Using ePRO systems would allow patients to self-report their symptoms in realtime, improving completion rates of self-reported questionnaires compared with paper surveys and enabling clinicians to provide earlier intervention in symptom management.15 To encourage alignment and help overcome barriers to implementation and use, we recommend the development of electronic PRMs that include standard, or “core,” questions that can be used in the development of valid and reliable PR-PMs (eg, specific questions validated to measure key concepts or existing measures such as those developed by PBGH or MNCM). Practices should be permitted to adapt these tools by including additional questions that help them assess and meet the specific needs of their patients. For example, practices that serve patients with prostate cancer may benefit from a single PRM that includes both general symptom burden questions that can be reported to meet VBP requirements and specific sexual function questions that can be used to support symptom management and shared decision-making.

4. Offer resources and incentives to support implementation. A 2013 survey of oncologists found that the respondents were generally optimistic about the potential of PRMs to improve efficiency and thoroughness of patient encounters, but they were concerned about resources and technology required to implement PRMs in their practices.16 A more recent survey found that implementation challenges have persisted, with insufficient staff support and lack of PRO integration in electronic health records continuing to be perceived burdens of PRM collection.17 To help providers overcome barriers to implementation, future CMS VBP models could offer technology support and financial incentives.

The OCF proposal introduced a monthly population payment (MPP) to cover Evaluation and Management Services, drug administration for beneficiaries, and “Enhanced Services,” including gradual ePRO implementation. CMMI should consider offering a higher MPP in the first year or two of oncology VBP model participation to account for the cost and time required by practices to implement these new data collection processes. For practices with limited resources to implement PRMs and report PR-PMs, extra financial support for implementation at the beginning of a program may help incentivize practice participation in new VBP models and encourage the use of PRMs. This concept is similar to the ACO Investment Model, which offered Medicare Shared Savings Program participants upfront and continuing monthly payments for infrastructure and staffing over the first two years of the program.18 Model results “demonstrated that underresourced providers can successfully reduce enough wasteful spending to offset the costs of delivery system investments” for Medicare.

CMMI also suggested that an OCF MPP could be weighted based on the risk stratification of each participating practice’s population. This weighting would benefit practices with higher-risk patients that may require more intensive PRM monitoring for symptoms and subsequent symptom management. For practices that are not currently using PRMs, CMS could also provide a publicly available electronic PRM to support implementation and use in the next oncology VBP model.

Finally, as part of a stepwise approach to PR-PM implementation, CMMI should allow practices to focus initially on implementing PRMs, followed by implementation of new PR-PMs that could be added to the program’s list of quality measures. This would reduce practice burden by allowing adequate time and preparation to implement reporting infrastructure and initiate performance improvement. It would also allow CMMI to use the next oncology VBP program to help test new PR-PMs that fill the gaps in measurement.


As the Biden administration considers opportunities to advance accountability for improved outcomes, including patient voices should be a top priority, especially in oncology. When designing the next oncology VBP model, CMS and CMMI should include additional PR-PMs and support for PRM implementation.


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2. “What is CMMI?” and 11 other FAQs about the CMS Innovation Center. Kaiser Family Foundation. February 27, 2018. Accessed March 18, 2021.

3. Oncology Care Model. Centers for Medicare & Medicaid Services. Updated February 18, 2021. Accessed March 18, 2021.

4. Fact Sheet: At Cancer Moonshot Summit, Vice President Biden Announces New Actions to Accelerate Progress Toward Ending Cancer As We Know It. The White House, President Barack Obama; National Archives and Records Administration. June 28, 2016. Accessed March 18, 2021.

5. Oncology Care First Model: Informal Request for Information. Centers for Medicare & Medicaid Services. November 25, 2019. Accessed March 18, 2021.

6. Basch E, Deal AM, Kris MG, et al. Symptom monitoring with patient-reported outcomes during routine cancer treatment: a randomized controlled trial. J Clin Oncol. 2016;34(6):557-565. doi:10.1200/JCO.2015.63.0830

7. Basch E, Deal AM, Dueck AC, et al. Overall survival results of a trial assessing patient-reported outcomes for symptom monitoring during routine cancer treatment. JAMA. 2017;318(2):197-198. doi:10.1001/jama.2017.7156

8. Schmidt T, Valuck T, Perkins B, et al. Improving patient-reported measures in oncology: a payer call to action. J Manag Care Spec Pharm. 2021;27(1):118-126. doi:10.18553/jmcp.2020.20313

9. OCM performance-based payment methodology, Version 6. Centers for Medicare & Medicaid Services. February 2020. Accessed March 19, 2021.

10. Oncology Care Model Overview. Centers for Medicare & Medicaid Services.
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11. CMS Innovation Center COVID-19 Flexibilities. Centers for Medicare & Medicaid Services. Updated June 3, 2020. Accessed March 19, 2021.

12. Quality Measure Development and Management Overview. Centers for Medicare & Medicaid Services. Updated August 24, 2017. Accessed March 19, 2021.

13. Patient reported outcomes measures comment letter, PROMS 526. Purchaser Business Group on Health. September 29, 2019. Accessed March 19, 2021.

14. Slate of MNCM Measures for 2020 Reporting-Marc Recommendation. MN Community Measurement. Accessed March 19, 2021.

15. Basch E, Still N, Herzfeld MT, Lempernesse B. The role of remote cancer symptom management in an evolving reimbursement landscape. Presented at: Association of Community Cancer Centers 47th Annual Meeting & Cancer Business Summit; March 2, 2021; virtual.

16. Jagsi R, Chiang A, Polite BN, et al. Qualitative analysis of practicing oncologists’ attitudes and experiences regarding collection of patient-reported outcomes. J Oncol Pract. 2013;9(6):e290-e297. doi:10.1200/JOP.2012.000823

17. Zhang B, Lloyd W, Jahanzeb M, Hassett MJ. Use of patient-reported outcome measures in quality oncology practice initiative-registered practices: results of a national survey. J Oncol Pract. 2018;14(10):e602-e611. doi:10.1200/JOP.18.00088

18. ACO Investment Model. Centers for Medicare & Medicaid Services. Updated December 16, 2020. Accessed March 19, 2021.

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