Winter 2025 Issue

Allies in Cancer Care
By Selena Chavis
For The Record
Vol. 37 No. 1 P. 10

Experts discuss what’s needed to ensure cancer registries do not contribute to health disparities.

The world has witnessed significant advances in cancer prevention, treatment, and outcomes in recent years, giving hope to many who suffer with this disease. Yet, while the overall cancer death rates in the United States declined by one-third from 1991 to 2021, the number of people with a history of cancer diagnosis more than doubled from 7.2 million in 1992 to 18.1 million in 2022, according to the American Association for Cancer Research.

A contributing factor to the ongoing challenge of cancer rests with public health disparities that result in certain population groups—primarily minority populations—shouldering the highest burden of cancer. The National Cancer Institute defines cancer disparities as “differences in cancer-related measures that include number of new cases, number of deaths, cancer-related health complications, survivorship and quality of life after treatment, screening rates, and stage at diagnosis.”

According to Taneal Carter, MS, MPA, manager of cancer care equity at the National Comprehensive Care Network (NCCN), health disparities in cancer care are multifaceted issues that often stem from a combination of socioeconomic, access, cultural, and systemic factors. “For instance, racial and ethnic minorities, such as Black, Hispanic, and Native American populations, frequently experience higher rates of late-stage cancer diagnoses and poorer survival outcomes,” she says.

Cancer registries are positioned to be a powerful ally against health disparities in cancer care, says Abbi Klowak, RT(T), MSHC, oncology software product marketing manager at Elekta. “We’ve found that different types of cancer registries can assist researchers and public health professionals by identifying groups of people that may be at high risk and guiding educational and prevention programs. The information from this comprehensive high-quality data can also help researchers assess patterns and trends within certain populations or geographies,” she says.

However, cancer registries rely on data captured through medical documentation, including the medical record, laboratory data, and death certificates. This means that registry data is only as good as the information it is drawing from.

“Lack of data clarity and completeness can hinder identification of gaps, trends, and needs that form the basis for development of targeted interventions aimed at specific communities and dilute the effectiveness of public health strategies,” Carter emphasizes.

Contributing Factors
Despite the world-class cancer treatment services provided in the United States, individuals in thousands of rural communities face a wide range of problems, from long travel distances to late-stage diagnosis. “This is a particularly grave issue, since cancer-related mortality and other negative treatment outcomes are statistically higher in these regions,” Klowak notes.

Social determinants of health—the nonmedical factors that influence health outcomes—are certainly associated with inequities, which can influence care in positive and negative ways. According to the World Health Organization, these include income and social protection, education, unemployment and job insecurity, working life conditions, and food insecurity, among others.

Rural communities may have fewer resources and specialists, Carter adds, leading to delayed diagnoses and treatment. Citing factors in these communities that contribute to disparities, she points to differences in access to health care, insurance coverage status, geography, unmet health-related social needs, and underrepresentation in the clinical trials that form the basis of treatment recommendations. “Furthermore, cultural beliefs and mistrust in medical systems can impact whether individuals seek care and participate in cancer research, further exacerbating these disparities,” Carter says.

Specifically for oncology, Klowak points out that having access to quality education around cancer care can be crucial. “With health care systems being overburdened and cancer cases rising globally, self-management of care is more important than ever,” she explains. “Fortunately, with advancements in technology and software—particularly through artificial intelligence (AI) and automation, along with the migration of health systems to the cloud—we can bring care closer to home. This helps patients take better control of their own care.”

For example, Nordland Hospital Trust in Norway uses eight different Elekta ONE patient companion follow-up programs, allowing patients to stay connected to their care team outside of the hospital. Advancements such as these are especially important to patients in rural communities and those undergoing new, innovative treatments, who may have limited access to their clinicians. A decision support dashboard gives clinicians access to all of a patient’s data, including self-reported weight, blood pressure, and pulse, as well as quality of life measures. This comprehensive view allows clinicians to intervene when needed and support symptom management according to the latest guidelines.

Data Clarity Needed
There are multiple types of cancer registries. According to the National Cancer Registrars Association, these include hospital registries, central registries, and special purpose registries.

• Hospital registries maintain data on all patients diagnosed and/or treated for cancer at their facility. Health care facilities report cancer cases to the central or state cancer registry as required by law.

• Central registries are population-based registries that maintain data on all cancer patients within certain geographical areas.

• Special purpose registries maintain data on a particular type of cancer, such as brain tumors.

While cancer registries are important tools for tracking the incidence and outcomes of cancer, disparities can arise when the information captured is incomplete or inaccurate because of the reliance on secondary sources, rather than the patients themselves. Carter notes that issues such as incomplete data entry, underreporting in source documentation and within patient subpopulations, and variability in how data is documented and collected can lead to significant gaps in understanding cancer trends among diverse populations. “Additionally, cancer registries do not capture information on health-related social needs, risk factors for cancer, or longitudinal data on treatment, recurrence, and response to therapy,” she explains. “It is worth noting that registries experience similar challenges to many datasets, both retrospective and prospective, regarding lack of representation and incomplete granular data.”

Klowak also points out that, as cancer incidence increases, there are more cancer cases to report. “This can add additional burdens to already short-staffed cancer registry departments,” she says. “To ensure high-quality data that can be used for research and prevention, the systems handling this information need to be safe, secure, and efficient.”

Experts agree that AI and automation are exciting areas within the cancer registry space that need to be explored and leveraged to help lighten the load and boost efficiency. At the same time, Klowak cautions that it is critical to ensure these tools are safe and secure. “We are just beginning to understand the full potential of AI within cancer care and are enthusiastic about the future positive impact of this technology,” she says.

Minimizing the potential for health disparities due to data discrepancies requires a multipronged stakeholder approach, Carter says. First, the industry must ensure that people interacting with health systems understand the benefits and guardrails related to data collection. This requires strategies that improve access to care through community health initiatives that provide education and screening in underserved areas. Providing education on the importance of data collection and utilization can help. Additionally, culturally tailored outreach programs can help bridge gaps in understanding and trust.

Second, enhancing the accuracy and completeness of medical documentation and other sources of data used by tumor registrars can improve the reliability of registry data and support the identification of disparities. Once identified, stakeholders can conduct a root cause analysis and develop targeted interventions. “Patient advocates have begun to advocate for improved collection practices to ensure that datasets are more representative of the broader cancer patient population,” Carter says. “Solutions that integrate all health care resources, including personnel, health information technologies, and EHRs, perhaps in a more structured and automated way, may help on the systems level.”

Collaboration among health care providers, health IT companies, community organizations, and policymakers is essential to creating a sustainable framework that supports collection of representative cancer-related data that will allow analyses generated from these datasets to the overall population at risk for and affected by cancer.

Equally important to industry-level initiatives, according to Carter, is the need to foster patient engagement and education. “Empowering patients with knowledge about cancer prevention, available screenings, and treatment options is crucial for improving health outcomes. Educated patients are more likely to seek care, adhere to treatment, and advocate for themselves within the health care system,” she says. “Engaging patients in understanding the benefits of collecting and analyzing data at a population level will improve comfort in providing personalized data.”

To that end, NCCN recently hosted a patient advocacy summit titled, “Better Information for Better Outcomes: Policy and Practice Strategies for Patient Education” to aid in this endeavor.

Carter notes that another important consideration is the impact of social determinants of health and health-related social needs, such as economic stability, education, and access to transportation, which significantly influence health outcomes. “Collecting this information and analyzing these determinants to assist development of holistic approaches to cancer care can lead to better equity in health outcomes,” she says.

Finally, on the patient engagement front, Carter points out that it’s vital to incorporate the voices of patients and community members in the design and implementation of data collection and interventions to ensure they are culturally relevant and effective in addressing the unique needs of diverse populations. “By deepening our understanding of these factors and actively working to address them, we can make meaningful strides toward reducing cancer health disparities and improving outcomes for all patients,” she says.

The Evolving Role of HIM
Given the increasing role of technology, the role of oncology data specialists—formerly known as cancer registrars—will continue to shift. Rather than manually entering data, they will morph into curators of the data. A policy statement from the National Cancer Registrars Association (NCRA) notes: “As data curators, cancer registrars must embrace their evolving roles, from contributing as [subject matter experts] in EHR builds, to managing structured data. NCRA underscores the pivotal role of continuous education, which enables registrars to oversee data identification, data capture, and data management effectively. The profession’s commitment to excellence serves as a benchmark for assessing new technologies and ensuring that health information advancements align with the accuracy and reliability integral to cancer data collection.”

Carter says HIM professionals play a crucial role in ensuring that cancer registries are accurate and comprehensive. “They are responsible for managing patient data, which includes collecting, analyzing, and reporting information from the medical record and other sources related to cancer diagnoses and treatments,” she says. “By ensuring that patient- and cancer-related data from diverse populations are accurately represented in registries, HIM can help identify trends and disparities in cancer care.”

Furthermore, HIM professionals can facilitate training for health care providers on the importance of documenting and collecting accurate information related to patient- and cancer-related characteristics and improve communication strategies to enhance patient engagement in reporting their health information. This holistic approach not only improves data quality but also contributes to better-informed health decisions.

National Initiatives Underway
NCCN has multiple ongoing initiatives aimed at reducing cancer health disparities.

• The organization’s Policy and Advocacy Program advocates for access to guideline-concordant care through legislation and regulatory policy, stakeholder engagement, and education and systems-level change, as evidence suggests that guideline concordance decreases disparities in care outcomes.

• The Diversity, Equity, and Inclusion Directors Forum focuses on sharing best practices in building a representative workforce that fosters an inclusive environment for patients within their cancer centers. NCCN is also currently piloting the Health Equity Report Card (HERC), a tool containing 19 practice recommendations intended to be a tool for payers, accreditation entities, and health care organizations seeking to measure and incentivize more equitable care practices while offering transparency for patients. The HERC has been piloted at five academic cancer centers, with final reporting pending, and is in the process of being piloted in community settings.

• NCCN, together with the American Cancer Society Cancer Action Network and the National Minority Quality Forum, convenes the Alliance for Cancer Care Equity (ACCE), a unifying space for organizations committed to addressing structural disparities resulting in inequitable cancer outcomes. The purpose of the alliance is to promote meaningful systems change through advocacy and education. Its focus is advancing access to equitable care, and the three high-impact focus areas identified for the ACCE are Diversity in Clinical Trials, Screening and Early Detection, and Patient Navigation.

• NCCN also regularly collaborates with community-based organizations and patient advocacy groups to advance equity in cancer care for all patients. The organization intentionally works to include and amplify voices across the entire oncology stakeholder spectrum and from historically underrepresented groups, working with a variety of collaborators to ensure equitable access to quality and effective cancer care and prevention so that all people can live better lives.

— Selena Chavis is a Florida-based health care writer.