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Sound Check: Listening More Closely to Oncology Patients

March 24, 2020

Research has shown the benefits to oncology patients of capturing patient-reported outcomes (PROs), including improved survival, quality of life, and symptom management. With the move toward patient-centered care and value-based payment (VBP), patient-reported measures (PRMs) bring patient voices into cancer care, while patient-reported performance measures (PR-PMs) can reward clinicians for outcomes and experiences that can only be assessed by the patients themselves.

Implementing appropriate PRMs and PR-PMs has been recommended in every blog post to date in our Quality Outlook blog series. Though emphasis on and availability of PRMs and PR-PMs is increasing, are we listening closely enough to oncology patients? This blog will explore this important question, identify barriers, and outline solutions for implementing meaningful PRMs and PR-PMs in oncology.

Selecting, Developing, and Using PRMs and PR-PMs

National organizations have been promoting the use of PRMs and PR-PMs to bring patient voices into VBP programs. The Centers for Medicare & Medicaid Services (CMS) recognizes the value of measures that capture patient experience of care and PROs in its Meaningful Measures Framework. Likewise, the Core Quality Measures Collaborative (CQMC), convened by America’s Health Insurance Plans and supported by the National Quality Forum (NQF), includes patient-reported outcome performance measures (PRO-PMs) as an example of high-priority innovative measures in its Principles for Core Set Measure Selection. CQMC also describes the need for measures of patient outcomes (specifically pain) and experience in its Medical Oncology Core Set. The US Food and Drug Administration encourages the use of PROs in clinical trials for drugs and medical devices as well as offers guidance for the use of appropriate PRO measures (PROMs) in medical product development to support labeling claims.

Measure developers and patient advocacy groups are also working to develop measures for areas critical to patient quality of life, such as symptoms, symptom burden, and survivorship. The Pacific Business Group on Health (PBGH) has received funding from CMS to develop health-related quality of life and pain measures. Minnesota Community Measurement recently approved for implementation cancer symptom control outcome measures for pain, nausea, and constipation.

CMS has begun to implement PR-PMs in VBP measure sets for oncology, but as of winter 2020, only a few PR-PMs are included in the Oncology Care Model (OCM), the Prospective Payment System-Exempt Cancer Hospital Quality Reporting program (PCHQR), and for optional reporting through oncology-specific QCDRs in the Merit-based Incentive Payment System (MIPS) (Figure 1).

*This list does not include PRO-PMs in measures sets not specific to the oncology population, but for which oncologists may be held accountable (eg, the optional CAHPS for MIPS survey in the general MIPS set).

The proposed Oncology Care First (OCF) model includes a new practice redesign activity that would require practices to report Electronic PRO (ePRO) data. Like the OCM, the OCF is proposed to use the Patient-Reported Experience of Care PR-PM to assess the quality of care and adjust practice payments.

Other CMS programs use process measures that assess the use of PRMs, such as NQF 0384: Pain Intensity Quantified, which is used in PCHQR, OCM, MIPS General Oncology, and MIPS Radiation Oncology. The prevalence of this single measure and the OCF ePRO proposal both illustrate a commitment to requiring clinicians to use PROMs, but not yet holding them accountable for performance on PRO-PMs.

PRMs and PR-PMs have also been implemented in private payer programs and used in clinical trials. Private payers often require their network clinicians to collect and/or submit PRMs.

Barriers to PRM/PR-PM Uptake

Despite the prioritization of PRMs and PR-PMs and identified benefits, incorporation of these measures into clinical practice has been glacial, and implementation in VBP is limited to just a few measures. Several barriers are slowing the uptake of PRMs and PR-PMs, including:

Clinician Reporting Burden

Clinician practices typically lack the infrastructure and resources to purchase PRM or ePRO systems, train staff, distribute to patients (and promote completion), and review or analyze data. Practices often struggle to meet different PRM use and PR-PM reporting requirements from different payers. VBP programs may not have sufficient incentives or penalties to defray practice investments. For example, if the OCF does not build in additional funding for practices to implement ePROs (or offer a free option), practices may struggle to meet the requirement.

Lack of PRM Standardization

Many clinician practices have implemented PRMs, but these tools are far from standardized. A 2019 white paper by Discern Health and the National Pharmaceutical Council identified 20 oncology-related PRMs, indicating the variety of tools currently available. Many practices have also implemented home-grown tools, as stakeholders noted in the fall 2019 OCF public listening session. Oncology practices also capture patient-reported outcomes and experiences via ePRO systems; a 2013 article reported a total of 33 unique ePRO systems.

While oncology practices may be able to effectively use a variety of PRMs and ePRO systems to improve patient care and measure some changes over time, the diversity of instruments for measuring patient outcomes and experiences in use has created difficulties in implementing PR-PMs. Different PRMs may have different fields and capture different concepts, but PR-PMs require standardized PRMs to ensure that they fairly measure clinician performance using the same yardstick.

Patient Survey Burden

Oncology patients may also be burdened with multiple surveys from the same or different practices, fatigued by duplicative or irrelevant questions, and frustrated by a lack of knowledge about what happens to the information they are providing.

Gaps in Meaningful PRM and PR-PM Measures

PRMs and PR-PMs may not be meaningful if they do not assess the concepts that are most important for oncology patients experiences of care and quality of life.

A recent project led by the National Coalition for Cancer Survivorship (NCCS) worked to redefine functional status among both cancer patients and survivors and prioritized PROs related to overall quality of life (physical and mental health), physical function, pain interference, fatigue interference, cognitive function, and psychosocial impact. Some of the NCCS-identified concepts are already reflected in current measures, but expanding the focus to the survivor population challenges clinicians and program designers to think downstream.

While work is underway to create measures of symptoms, symptom burden, and survivorship, there are also significant gaps in the availability of PR-PMs in other areas important to patients, including validated measures of care concordance, financial toxicity, personalized medicine/care planning, caregiver burden, and survivorship. Patient advocates, such as the National Patient Advocate Foundation, have argued that another gap in measures and their implementation in programs such as the OCM is the impact that treatment may have on patients’ daily lives.

Recommendations for Listening More Closely to Oncology Patients

The following recommendations address the barriers presented above to accelerate the use of PRMs and PR-PMs for oncology patients.

  • CMS and other payers should promote the adoption of standard validated PRMs to reduce clinician and patient burden and support the calculation of PR-PMs.

    • Patients and families should have input into what standard fields are required and provide feedback over time on how practices are collecting PRMs and using data in clinical care.

    • The finalized version of the OCF, for example, should require the use of standard fields in ePROs and offer additional financial incentives to support implementation.

    • PBGH has recommended that such a requirement should be implemented over time as clinicians gain more experience. They have also recommended a “cascade approach” to measurement that moves from measuring data collection to incentivizing improved PR-PM performance.

  • ePRO systems should incorporate standard validated PRMs. These systems should also allow practices to include additional fields to capture data that support the unique care needs of cancer populations.

  • Measure developers should pursue additional gap-filling concepts to support future inclusion of PR-PMS in both public and private value-based payment programs, such as the OCF.

    • Payers and funders can support the development or enhancement of PRMs and PR-PMs that capture these concepts.

  • Payers and measure developers should include patients, survivors, and families in program design, measure/concept selection, development, and evaluation.

  • Accountability programs should address the survivorship phase of oncology care.

  • Payment programs should build in large enough incentives to defray clinician practice costs for implementation.


The interest and activity surrounding the use of oncology PRMs has sparked efforts to develop and implement PRMs. However, more action is needed to ensure that valid, comprehensive, and meaningful PRMs are available at the clinician, practice, and population levels. Listening more closely to oncology patients requires a health care-wide commitment to measuring care experience and outcomes from the patient perspective and rewarding clinicians for the outcomes that are most important to patients and their families.

Read other installments from the Quality Outlook series.

About the Quality Outlook Commentary Series

Breakthrough treatments in cancer care, including precision therapies tailored to specific patient factors, are driving rapid changes in the definitions of oncology quality and value. Efforts to implement value-based care models in oncology must meet the demands of evolving science, new best care practices, and shifting patient priorities. Quality measures must be up-to-date and relevant. Payment models must recognize the challenges and costs of managing complex patient populations with diverse needs. In this JCP blog series, Quality Outlook, Discern Health will explore key issues in oncology quality and value through posts focused on measurement, value-based payment, and quality improvement.

About Tom Valuck, MD, JD

     Tom Valuck, MD, JD

Tom Valuck is a Partner at Discern Health. He is a thought leader on health care system transformation and helps lead the firm’s focus on achieving better health and health care outcomes at a lower cost. Tom’s work at Discern includes facilitating the exploration of next-generation measurement and accountability models for health care delivery systems. He also helps clients develop strategies to achieve success within the value-based marketplace.


About Theresa Schmidt

     Theresa Schmidt

Theresa Schmidt has more than a decade of experience in health care policy, quality, and health information technology. As a Vice President at Discern, she leverages a strong background in non-acute care, analytics, quality measures and quality improvement, value-based payment, and research to help Discern clients and partners achieve their business goals. Theresa has a diverse health care background and has held prior positions at the National Partnership for Hospice Innovation, Healthsperien, Avalere Health, and eHealth Data Solutions. She serves on the board of the Advancing Excellence in Long Term Care Collaborative.

About David Blaisdell

     David Blaisdell

David Blaisdell, a Director at Discern Health, leads and manages client projects, providing insight and subject matter expertise, particularly on quality landscape analyses and measure gap identification. David has led and contributed to projects focused on oncology quality measurement to identify key gaps in measures used in accountability programs and opportunities for measure development. Through this experience, David helps clients navigate measurement and value-based payments and define strategies for success.


About Manasi A Tirodkar, PhD, MS

     Manasi Tirodkar, PhD

Manasi A Tirodkar is a Director at Discern Health. She brings a wealth of knowledge and experience in health services research, quality measurement, and practice transformation in primary and specialty care settings. Prior to joining Discern, Manasi was a Lead Research Scientist at the National Committee for Quality Assurance (NCQA) for more than 10 years. At NCQA, she led measure development projects spanning various disease conditions and populations, including oncology.


About Discern Health

DiscernDiscern Health is a consulting firm that works with clients across the private and public sectors to improve health and health care through quality-based payment and delivery models. These models align performance with incentives by rewarding doctors, hospitals, suppliers, and patients for working together to improve health care while lowering total costs.

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