How Do You Measure Whether Cancer Centers Meet New Survivorship Care Standards?

More than 18 million people in the United States are living with a history of cancer, and that number continues to climb as treatments improve and the population ages. Yet the care these survivors receive after treatment ends has long been inconsistent, fragmented, and difficult to evaluate. In 2024, the National Cancer Institute took a major step toward fixing that problem by releasing the first National Standards for Cancer Survivorship Care, a set of aspirational recommendations designed to guide health systems as they build and refine services for survivors. But a standard is only as powerful as the ability to measure whether it is being met, and a new study published in the Journal of Cancer Survivorship reveals just how complicated that measurement challenge turns out to be.

The study, led by Sara A. Flores, Rachelle Brick, and Sallie J. Weaver of the National Cancer Institute’s Healthcare Delivery Research Program, together with Michelle Doose of the institute’s Behavioral Research Program, examined a unique natural experiment. Following the release of the standards, the NCI funded 18 supplemental research projects across the country with a twofold mission: to assess how well existing survivorship services and programs aligned with the new standards, and to identify the barriers and facilitators that shape implementation. Because each project team independently developed its own approach to measuring alignment, the resulting portfolio offered researchers an unprecedented window into how the field actually operationalizes the standards when left to its own devices.

To make sense of this diversity, the research team conducted a systematic synthesis of the measurement tools used across the funded projects. Trained abstractors applied a standardized codebook to extract detailed characteristics at both the project level and the measure level, including which specific national standards were assessed, what types of data were collected, which methods were used, and who the respondents were. Fourteen of the 18 projects ultimately contributed materials to the analysis, yielding a total of 91 distinct measurement tools spanning surveys, interview protocols, environmental scan protocols, and variables drawn from electronic health records and administrative data.

The first striking finding concerns which parts of the standards attracted the most measurement attention. The 2024 National Standards are organized into three domains: policy, processes, and evaluation and assessment. When the researchers categorized the 91 tools, they found that the overwhelming majority, 82.4 percent, addressed the health system process standards, which describe how survivorship care should actually be delivered to patients. By contrast, only 31.9 percent of tools addressed health system policy standards, which concern the organizational structures and commitments that underpin survivorship programs, and a mere 15.4 percent addressed the evaluation and assessment standards, which call on systems to monitor and improve their own performance.

This imbalance matters because the three domains are conceptually interdependent. Policy standards create the institutional scaffolding, such as leadership support and dedicated resources, that allows process standards to be implemented sustainably. Evaluation standards, in turn, generate the feedback loops that tell a health system whether its processes are working and for whom. A measurement landscape dominated by process checks risks producing a skewed picture of alignment, one in which a cancer center might appear to be delivering survivorship services while lacking the governance and self-assessment infrastructure to sustain or improve them. The authors suggest that this pattern likely reflects both the relative concreteness of process standards and the practical difficulty of writing tools for abstract organizational commitments.

The second major finding concerns the depth of measurement rather than its breadth. When the team classified what each tool actually captured, they found that 72.5 percent assessed the existence or occurrence of care elements, essentially yes-or-no questions about whether something happens. Does the program have a survivorship care plan? Was a referral made? Did a visit occur? Far less commonly captured was the quality or degree to which a standard was met, or how care processes actually unfolded in practice. This distinction is fundamental to quality measurement. Knowing that a service exists says nothing about whether it is timely, appropriate, equitable, or responsive to patient needs, and the study’s findings suggest that the field’s current toolkit is far better at detecting presence than at judging performance.

The methodological diversity documented in the study is itself informative. The 91 tools ranged from validated patient-reported outcome instruments to bespoke interview guides and electronic health record queries, reflecting the absence of any shared, ready-made measurement approach at the time the standards were released. This kind of grassroots innovation is valuable, but it comes at a cost: without common operational definitions, findings from one health system cannot be directly compared with those from another, and the field cannot aggregate local insights into a national picture of survivorship care quality. The problem echoes well-documented challenges in hospital accreditation research, where measuring the effects of complex, system-level interventions has proven notoriously difficult, and in quality measurement more broadly, where misalignment across state and regional measure sets has long hampered comparison.

The study’s implications reach beyond survivorship care into the broader science of implementation. Implementation researchers have long argued that strong measurement infrastructure is a prerequisite for learning health systems, in which care delivery continuously improves through the systematic collection and use of data. The NCI supplement portfolio demonstrates both the promise and the peril of funding implementation pilots ahead of measurement standardization. On one hand, the projects generated a rich, ground-level understanding of how diverse cancer care delivery settings interpret the standards and what barriers they face. On the other hand, the heterogeneity of the resulting tools means that synthesizing those insights requires exactly the kind of labor-intensive coding exercise this study performed, and some information may resist aggregation altogether.

The authors point toward several concrete opportunities for strengthening the measurement foundation. Chief among them is the development of shared operational definitions for each standard, phrased concretely enough to be applied consistently across settings that range from large academic cancer centers to community oncology practices. Such definitions would need to accommodate legitimate variation in how survivorship care is organized while preserving the core intent of each recommendation. The team also highlights the value of measures that move beyond existence checks toward assessments of quality and fidelity, drawing on established frameworks for evaluating health care quality and on growing experience with electronic clinical data standards that make process measurement more feasible at scale.

For the growing community of cancer survivors and the clinicians who care for them, the stakes of this seemingly technical work are substantial. Survivorship care encompasses surveillance for recurrence, management of late and long-term treatment effects, attention to psychosocial wellbeing, and coordination among many providers, often over decades. Standards that exist only on paper cannot close the well-documented gaps in how this care is delivered, and gaps that cannot be measured cannot be systematically addressed. By mapping how the first wave of implementation projects measured alignment with the 2024 National Standards for Survivorship Care, this study provides the field with an honest self-portrait: a committed and creative research community that has, so far, been measuring the easiest things most often. The path forward, the authors argue, lies in building the shared measurement infrastructure that will let every cancer care setting see clearly where it stands, and where it needs to go, in serving the millions of Americans who live beyond a cancer diagnosis.

Subject of Research: Measurement of alignment with the 2024 National Standards for Cancer Survivorship Care across NCI-funded implementation projects

Article Title: Measuring uptake of the 2024 national standards for survivorship care: Insights from National Cancer Institute funded pilot projects

Article References: Flores, S. A., Doose, M., Brick, R., & Weaver, S. J. (2026). Measuring uptake of the 2024 national standards for survivorship care: Insights from National Cancer Institute funded pilot projects. Journal of Cancer Survivorship. https://doi.org/10.1007/s11764-026-02130-1

Image Credits: AI Generated

DOI: 10.1007/s11764-026-02130-1

Keywords: cancer survivorship, survivorship care standards, National Cancer Institute, quality measurement, health care delivery, implementation science, electronic health records, care processes, health systems, measurement infrastructure, cancer care quality, patient-reported outcomes