By Gina McNellis and Patricia Thompson

The incidence of cancer in the U.S. is on the rise, with the Centers for Disease Control and Prevention predicting a 50% increase in total cancer cases by 2050, primarily due to an aging population. Concurrently, the incidence of early-onset cancers in individuals under 50 is also increasing. A study published by BMJ Oncology projects a 31% rise in early-onset cancer rates and a 21% increase in cancer deaths by 2030.

The critical role of cancer informatics
As cancer rates continue to climb, there is a heightened emphasis on the need for high-quality data, or "cancer informatics," to support cancer-related public health initiatives. The National Cancer Registrars Association defines cancer informatics as "the intersection of information science, computer science, medical oncology, communication, and healthcare." This encompasses all "resources, devices, and methods required to optimize the acquisition, storage, retrieval, and use of information in cancer."

However, the exponential growth and increasing complexity of cancer data pose significant challenges for its management. Data originates from diverse sources, including clinical records, imaging studies, pathology reports, and genomic data. Skilled experts must employ a holistic approach to accurately connect these disparate data points and extract meaningful insights. This data then informs critical downstream activities, such as public health surveillance efforts, timely interventions, precision medicine approaches, new treatment guidelines and policy recommendations, clinical trial enrollment, and clinical research ideas.

The growing need for cancer informatics highlights the crucial value of cancer registries. Data from cancer registry programs can support clinical care outcomes, identify new research and public health initiatives, and influence regulatory activities. Furthermore, the convergence of big data innovations and incentives for practicing value-based medicine has brought clinical pathways to the forefront as a means to drive precision and optimization of care for patients. Cancer registries play a vital role in providing the necessary data to develop defined treatment pathways that address rising costs, mitigate patient risk, reduce variability, and achieve better, more predictable outcomes.

Navigating cancer registry management challenges
Despite the critical importance of abstracting and analyzing cancer registry data, organizations face significant challenges in maintaining their cancer registries.

All healthcare providers and entities that diagnose or provide the first course of treatment to a cancer patient are legally required to report case information to their state's cancer registry. Many healthcare organizations struggle to maintain timely data submission and cancer registry compliance, often due to insufficient access to certified tumor registrars, now referred to as Oncology Data Specialists-Certified (ODS-Cs). The Commission on Cancer has established strict guidelines regarding the type and format of data that ODS-Cs must enter into the registries; using unqualified or inexperienced individuals to submit data significantly increases the risk of errors and failing to meet accreditation requirements. In the realm of cancer prevention and treatment, data inaccuracies are more than a nuisance; they can cause real-world harm and prevent people who could benefit from life-saving therapies from receiving them.

Another challenge many hospitals and health systems face in managing cancer registries is the siloing of data across multiple systems and the locking of data in clinical free text due to manual documentation and electronic medical record (EMR) entry. While data from disparate sources is valuable in identifying drug candidates more quickly, the text-based nature of the data inhibits the process by making it difficult to analyze oncology data.

Unlocking the benefits of outsourcing and partnerships
Research reveals that more than half of clinical data management professionals need to be more confident in the quality or completeness of their clinical data from an audit and compliance perspective. Cancer data abstraction requires an extensive skillset and is a time-consuming process for the limited resources available at cancer facilities. As a result, many organizations turn to outsourcing, establishing key partnerships with data abstraction and cancer registry experts. In addition to lowering costs and helping ensure facilities meet accreditation requirements, outsourcing can help mitigate the impact of labor shortages while also alleviating the burden on existing staff.

When choosing a cancer registry outsourcer, organizations should prioritize those that focus on data abstraction best practices, compliance, and data governance. Equally important is finding a cancer registry outsourcer with a team of experienced ODS-Cs who can provide comprehensive registry support, including scalable staffing, registry data governance, case finding, abstracting, analysis, reporting, cancer program accreditation services, submission to national standard cancer registries, and data collection for special studies. Organizations should choose a partner whose ODS-Cs are trained and experienced in the use of audit tools to abstract and review data, as well as extracting data from a system's EHR to review each patient's entire treatment, including labs, x-rays, surgeries, and pathology reports, to compile insights and enter information into the registry software.

As every organization has unique needs, not all of them will require a fully outsourced solution, and conditions can change over time. Therefore, it is essential to choose a partner that allows for a hybrid approach and enables seamless scaling to accommodate growth. One organization may need help working down a backlog of abstracts, while another may need assistance in reducing errors. Others will benefit from outsourcing the entire registry process. A managed outsourcing solution can leverage onshore, offshore, or a combination of both types of resources to help providers gain efficiency, improve cost, and access expertise unavailable locally.

Driving progress in the fight against cancer
To support the public health initiatives and clinical research needed to make genuine headway in the war against cancer, organizations need the ability to collect, submit, analyze, and share quality data from across their enterprises. Outsourcing cancer registry management can play a vital role in achieving this goal, particularly when partnering with experienced providers who prioritize data quality, compliance, and governance.

By leveraging the expertise of ODS-Cs and implementing robust quality control measures, organizations can ensure the accuracy and completeness of their cancer registry data. This, in turn, enables the development of clinical pathways and value-based approaches that drive precision and optimization of care for patients. Through collaborative efforts and the sharing of insights derived from cancer registry data, the healthcare community can work towards addressing rising costs, mitigating patient risk, reducing variability, and achieving better, more predictable outcomes in the fight against cancer.

About the authors: Gina McNellis, MA, RHIA, ODS-C, CHP, is senior director global registry services at Omega Healthcare. Patricia Thompson, MPH, RHIT, ODS-C, is oncology data manager for Omega Healthcare.