This article is the eighth in a 10-part series highlighting the work of the Alliance for Equity in Cancer Care, a national initiative focused on expanding access to high-quality cancer care for underserved.
Each installment will spotlight a different Alliance grantee site, exploring how healthcare teams are partnering with community organizations to break down barriers to care and reimagine what navigation looks like on the ground.
Through these stories, we’ll see how tailored, community-informed solutions are making cancer care more accessible.
The NCCN, a nonprofit alliance of 33 cancer centers, is dedicated to defining and advancing quality, effective, equitable, and accessible cancer care and prevention for all. Their work includes the development of a reliable, evidence-based tool for providers and institutions, the Health Equity Report Card, to measure and incentivize more equitable cancer care practices.
Now, in part through the support of the Alliance for Equity in Cancer Care (the Alliance), NCCN is reimagining this tool for use in community-based practices, expanding the adoptability of an important resource.
Cancer care has seen significant progress in recent decades, particularly in improving quality of life for patients and long-term survivorship. However, these gains have not been distributed equitably across communities.1 Outcome disparities and access to care continue to disproportionately affect patients from historically marginalized racial and ethnic groups. To better characterize these inequities, NCCN, along with the American Cancer Society Cancer Action Network and the National Minority Quality Forum, launched the Elevating Cancer Equity (ECE) initiative in 2020.
Structured surveys canvassing 600 patients/caregivers and 208 oncologists were conducted to assess patient experiences and identify barriers to care, with particular attention to how racial disparities may influence care delivery and outcomes. Following data collection, an interdisciplinary working group of 17 national experts on disparities in cancer care (including patients, caregivers, physicians, researchers, and industry representatives) was convened.
The group reviewed survey findings and developed a framework of 17 evidence-based, actionable recommendations to support organizational policy and practice changes called the Health Equity Report Card (HERC).2 An implementation plan with scoring across 4 domains was developed to facilitate more objective measurement of performance.3 This version of the tool was piloted in academic oncology institutions (manuscripts in progress).
Recognizing the importance of measuring health equity broadly and ensuring the HERC would be translatable across a variety of practice settings, the NCCN embarked on an effort to test the tool’s broader feasibility within the community practice setting. A Community Oncology Working Group (COWG) of 10 leading experts in community oncology (oncologists, patient advocates, patient navigators, and health equity experts) was convened to review the HERC and its implementation plan, examining it for applicability in community settings.
In the end, the COWG upheld the existing measures and added 2 additional measures within the Quality and Comprehensiveness of Care domain to emphasize the importance of survivorship care planning and biomarker testing in delivering equitable cancer care. Additional revisions were made to the implementation plan, including expansion of types of supporting evidence that could be utilized for scoring purposes and clarification of measures and metrics.
Feedback obtained from the academic pilot sites and the COWG was used to refine the HERC and its implementation plan, with the report card now including 19 performance measures and equity practices across 4 domains: Community Engagement, Accessibility of Care and Social Determinants of Health, Addressing Bias in Care Delivery, and Quality and Comprehensiveness of Care (Figure 1).4 Each domain receives its own score.
By focusing on key domains that impact care delivery, the HERC serves as an objective assessment that informs quality improvement initiatives and supports equitable care delivery. Measures within these 4 domains underscore the critical role of patient navigation in promoting accessible and equitable cancer care. These measures:
Using the HERC, patient navigators and other healthcare providers can identify potential challenges patients may face in accessing and obtaining care and develop targeted interventions to address specific barriers. As such, the HERC supports informed resource allocation toward developing and strengthening comprehensive care delivery, patient engagement, treatment adherence and outcomes, as well as implementing and improving patient navigation services to support receipt of quality, person-centered care.
“We don’t have a guide for community practices, so this is helpful. It brings value to patients and gives them a voice.” —HERC-CS Project Site Team Member
Following its development, the initial iteration of the HERC was piloted across 5 academic cancer centers to assess feasibility in addressing racial and ethnic disparities. Further consideration and discussion during the academic pilot project established that the HERC could be applied more broadly to address a multitude of diverse factors in underrepresented and underserved patients.
Because most cancer care in the United States is delivered in community settings, the ECE Working Group also intended that the tool be used beyond academic centers, including community-based oncology practices that care for patients with diverse backgrounds and distinct clinical and social needs.5 However, community-based oncology practices often face additional constraints (ie, financial limitations, workforce shortages, technological capacity challenges, and barriers related to care access) that may impact their ability to implement and sustain quality improvement initiatives.6
With the HERC already emphasizing the importance of working with community-based organizations (CBOs) and prioritizing patient navigation services, this collaborative approach enables institutions to build trust within communities, ensuring patients feel supported and empowered to seek the care they need.
Following revisions to the HERC and its implementation plan, NCCN, with support of the Alliance, began feasibility testing in the community oncology setting, initiating the HERC for the Community Settings (HERC-CS) project nationwide.
Collaboration between NCCN, community oncologists, patient advocates, patient navigators, health equity experts, and community organizations would prove to be key not just in the formulation of the updated HERC but also in how to best prepare for full implementation of it in the future. NCCN leveraged their State Oncology Society Forum and the COWG, which already had experience with optimizing the HERC, to streamline recruitment processes and cultivate meaningful relationships and engagement with community sites. NCCN recruited 5 community sites in different states (Figure 2), ensuring site diversity in geographic location, practice size and type, and populations served. At the time of this publication, the pilot implementation of the HERC at these sites is ongoing, and data collected will be used to further improve broad applicability and utility of the tool across practice settings.
To support sites during the HERC-CS pilot project, NCCN created a free-to-use Equity Shared Resources Library, a repository for information, tools, and best practices aimed at addressing disparities in cancer care and access. The library currently hosts over 60 resources, including the Navigating Principal Illness Navigation (PIN) Services Workflow Tool developed by the Alliance, and continues to expand as new resources are identified. These resources, currently in use by other Alliance partners, further support patient navigation services, make community-oriented resources more easily available, and promote further collaboration and engagement both within the Alliance and the larger healthcare ecosystem.
As the Equity Shared Resources Library continues to grow, it is anticipated that the library can be leveraged to support quality improvement and practice implementation across diverse care settings in alignment with the HERC domain benchmarks.
With a focus on patients and community-engaged care, the HERC emphasizes not only the essential roles CBOs and patient navigation play in advancing equitable cancer care but also the need for a comprehensive, coordinated approach to care delivery.
By collaborating and engaging directly with stakeholders, NCCN seeks to ensure that patient priorities, lived experiences, and community needs are reflected in the resources used by the providers and health systems that serve them. Grounded in cross-sector collaboration and evidence-informed guidance, the HERC is intended to support measurable, system-level improvements in cancer care delivery and contribute to more equitable outcomes across diverse populations.
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