The Challenge of Cancer Registry Management is Growing as the Need for Cancer Informatics Escalates - Omega Healthcare

The Challenge of Cancer Registry Management is Growing as the Need for Cancer Informatics Escalates

Omega Insights

Gina McNellis, MA, RHIA, ODS-C, CHP; Senior Director Global Registry Services
Patricia Thompson, MPH, RHIT, ODS-C; Oncology Data Manager

The number of individuals in the US being diagnosed with cancer is increasing. The Centers for Disease Control and Prevention predict that the total number of cancer cases will increase by 50% by 2050, driven primarily by an aging population.[1] At the same time, incidence of cancer in those under 50 are also on the rise. A study published by BMJ Oncology projects that early-onset cancer rates will rise by 31% and cancer deaths by 21% by 2030.[2]

The total number of cancer cases will increase by 50% by 2050.[3]

The need for cancer informatics

With cancer rates increasing, there is a renewed emphasis on the need for quality data—or “cancer informatics”—to support cancer-related public health efforts. The National Cancer Registrars Association defines cancer informatics as “the intersection of information science, computer science, medical oncology, communication, and healthcare.”[4] This includes all “resources, devices, and methods required to optimize the acquisition, storage, retrieval, and use of information in cancer.”

However, as the volume of cancer data increases exponentially and becomes more complex, it has become more challenging to manage. Data comes from a wide variety of sources, including clinical records, imaging studies, pathology reports, and genomic data. Skilled experts require a holistic approach to connect these disparate pieces of data accurately and draw relevant insights. That data then feeds critical downstream activities – including 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 shines a spotlight on the critical 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.

Cancer registries are critical to support cancer initiatives involving public health and policy, precision medicine, clinical research, and more.

Cancer registry challenges

While abstracting and analyzing cancer registry data is vital, organizations face key challenges in maintaining their cancer registries.

All healthcare providers and entities that diagnose or provide the first course of treatment to a cancer patient must report case information to their state’s cancer registry in accordance with state and federal law. Many healthcare organizations find it difficult to maintain timely data submission and cancer registry compliance, often because they don’t have sufficient access to certified tumor registrars, now referred to as Oncology Data Specialists-Certified (ODS-Cs). There are strict guidelines from the Commission on Cancer around the type and format of the 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 the standards can risk meeting accreditation requirements.[5] 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 getting them.

Another challenge many hospitals and health systems face in managing cancer registries is that their data is siloed in multiple systems and remains locked in clinical free text due to manual documentation and electronic medical record (EMR) entry.[6],[7] While data from disparate data sources is valuable in identifying drug candidates more quickly, the fact that the data is text-based inhibits the process as it makes it difficult to analyze oncology data.

A new approach

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.[8] Cancer data abstraction requires an extensive skillset and is a time-consuming process for the limited resources available at cancer facilities. This is why many organizations turn to outsourcing, establishing key partnerships with data abstraction and cancer registry experts. Besides 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 look for one that focuses on data abstraction best practices, compliance, and data governance. Equally important is finding a cancer registry outsourcer that has built a team of experienced ODS-Cs to provide 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 out of 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.

The best cancer registry outsourcing partners will have an in-depth quality control program that regularly audits staff and registry data.

Because every organization has unique needs, not all of them will need a fully outsourced solution—and conditions can change over time. That’s why choosing a partner that allows for a hybrid approach and enables seamless scaling to accommodate growth is essential. One organization may need help working down a backlog of abstracts, while another may need help reducing errors. Still, 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.

Success story

When a multifacility academic health system in the Midwest developed an extensive backlog of abstracting, they began to look for a new outsourcing partner who could help them reduce bottlenecks and improve processes.

By working with Omega Healthcare, the system was able to:

  • Remove 1,500 cases from the backlog within first 90 days
  • Improve workflow and the data abstraction process
  • Reduce labor costs through automation
  • Access data to support strategic decision making

The journey to eradicating cancer

To support 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. Omega Healthcare is a great option.

With management oversight by global registry experts, Omega Healthcare offers a managed outsourcing solution leveraging onshore and offshore resources as an alternative to traditional staffing solutions’ transactional, fragmented approach.

Omega Healthcare provides health data abstraction and cancer registry solutions to improve patient care and reduce administrative burdens and health management costs.

Clinical Trial Data Management Challenges and Trends

[1] “Cancer Incidence Projections in the United States Between 2015 and 2050,” Hannah Weir, Trevor Thompson, Sherri Stewart, Mary White, Centers for Disease Control and Prevention, June 10, 2021

[2] “Global trends in incidence, death, burden and risk factors of early-onset cancer from 1990 to 2019,” Jianhui Zhao, Liying Xu, Jing Sun, Mingyang Song, Lijuan Wang, Shuai Yuan, Yingshuang Zhu, Zhengwei Wan, Susanna Larsson, Konstantinos Tsilidis, Malcom Dunlop, Harry Campbell, Igor Rudan, Peige Song, Evropi Theadoratou, Kefeng Ding, Xue Li, BMJ Oncology, Accessed from website November 27, 2023

[3] “Clinical Research Trends & Insights for 2023,” WCG, Accessed from website November 27, 2023

[4] “Cancer Informatics,” National Cancer Registrars Association, Access from website November 27, 2023

[5] ”Optimal Resources for Cancer Care (2020 Standards)”. Updates reflected in this version are effective as of January 1, 2023. Standard 4.3, page 26

[6] “Leveraging Comprehensive Cancer Registry Data to Enable a Broad Range of Research, Audit and Patient Support Activities,” Lee B, Gately L, Lok SW, Tran B, Lee M, Wong R, Markman B, Dunn K, Wong V, Loft M, Jalili A, Anton A, To R, Andrews M, Gibbs P. Leveraging Comprehensive Cancer Registry Data to Enable a Broad Range of Research, Audit and Patient Support Activities. Cancers (Basel). 2022 Aug 26;14(17):4131. doi: 10.3390/cancers14174131. PMID: 36077668; PMCID: PMC9454529.

[7] “Use of Natural Language Processing to Extract Clinical Cancer Phenotypes from Electronic Medical Records,” Guergana Savova, Ioana Dancium, Folami Alamudun, Timothy Miller, Chen Lin, Danielle Bitterman, Georgia Tourassi, Jeremy Warner, National Library of Science, November 1, 2019

[8] Ibid.

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