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May/June 2021

Cancer Registry, Care Coordination Go Hand in Hand
By Monique Griffin
For The Record
Vol. 33 No. 3 P. 22

The data collected provide valuable evidence-based information for use along the care spectrum.

According to the American Cancer Society, 1 in 3 people will be diagnosed with cancer in their lifetime. And while cancer has been fought with research, science, and medicine, the battle was taken to another level in the 1990s through the use of data.

In 1992, Congress passed the Cancer Registries Amendment Act as an amendment to the Public Health Services Act. The amendment’s purpose is to authorize contracts and grants to operate population-based, statewide cancer registries to collect data on cancer occurrences. Administered by the Centers for Disease Control and Prevention (CDC), the amendment established the National Program of Cancer Registries (NPCR).

The NPCR collects data on not only cancer occurrence but also the type, extent, and location of the cancer. The type of initial treatment received and outcomes are also noted. Before the establishment of the NPCR, 10 states had no registries, and those that did lacked support, standards, and resources to fully expand their databases.

Now, 97% of the US population is covered by central registries in 46 states, the District of Columbia, Puerto Rico, the US Virgin Islands, and US Pacific Island jurisdictions. These central registries are supported by the CDC through the NPCR.

There are two types of overarching cancer registries: population-based registries and hospital-based registries. A third type of registry, specialty cancer registries, usually spring out of grassroots efforts by those affected by a specific type of cancer.

Population-based registries are defined usually by a geographical area and focus on tracking trends in that area. The data are used to determine cancer patterns among the defined population and any subpopulation in the defined location, identify trends, and help prioritize the allocation of health resources, as well as to make these data available to advance research. Public health, cancer prevention, and early detection are the top-tier goals of these registries.

There are two types of hospital-based registries: single hospital registries and multi-institutional registries. Single hospital registries collect and maintain data on all patients diagnosed with cancer and/or receiving cancer treatment in their facility. Most hospital-based registries are focused on patient care, how it can be improved, and the administrative functions and processes. The data are also used for research and professional education.

When several institutions adopt common standards and pool their data in a registry, their goal, in addition to improving patient care, is to try to establish natural histories and etiologies of the reported cancers in their combined registry.

“Cancer registry data includes broad categories, such as patient demographic information, disease information (stage, histology, morphology), comorbid conditions (other existing diseases or conditions), genomic information (tests, results, consultation reports), labs/vital signs (tumor markers, other pertinent labs, patient vitals), treatment information (agents, surgeries, radiation, start and stop dates, termination reasons), and outcome information (disease status, patient status, date of death or recurrence),” says Shannon Houser, PhD, MPH, RHIA, FAHIMA, a professor in the health services administration department at the University of Alabama at Birmingham.

Cancer registries capture complete and accurate data that are utilized by researchers, hospitals, and other health care organizations to help determine the most up-to-date recognized standards for treatment plans.

Experts in Demand
Much of the burden for collecting cancer data falls to cancer registrars. “Cancer registrars have a responsibility to be as accurate as possible with the data that are being collected and captured about the patient and their cancer story,” says Gina McNellis, MA, RHIA, CTR, CHP, the director of registry services at himagine solutions. “These data are being used by various individuals and organizations that need the most accurate information about the patient’s cancer and the treatments they are receiving to see how the treatment plans are working.”

“Data collected and recorded in the cancer registries provide valuable longitudinal and evidence-based information for care coordination,” Houser says.

Certified tumor registrars (CTRs), who manage and analyze clinical cancer data, receive rigorous training and testing in order to earn their certifications. The demand for knowledgeable CTRs is high, and some companies have made it their business to offer the services of these experts to their clients.

“We are dedicated to providing education and training to our consultants,” says Suzanne Neve, RHIA, CTR, director of cancer registry at Medical Record Associates. “All consultants are required to remain in good standing with their NCRA [National Cancer Registry Association] credentials. In the past, our consultants were required to participate in their state association’s yearly on-site education conference, but with the recent pandemic, we are encouraging our consultants to participate in webinars provided by NAACCR [North American Association of Central Cancer Registries], states, and other companies to ensure they are educating themselves on the most current industry standards.”

“Our staff [at himagine solutions] of subject matter experts ensure that the registrars are current on the new standards, rule changes, and treatment trends,” McNellis says. “We are aware of the shortage of CTR talent. We can provide our staff and potential new staff who want to take their career to another level, and we offer that bridge for career advancement with education, quality auditing, and management training.”

Recent Developments
Care coordination is another area in which registrars are having an impact. “Care coordination in cancer care fosters collaboration and information sharing between providers, reduces duplicate tests, aids in delivering appropriate and timely follow-up, and enables high-quality patient care,” Houser says.

Houser and her colleagues Jennifer Peterson, PhD, RHIA, CTR; Cathy Flite, PhD, RHIA, FAHIMA; and Lakesha Kinnerson, MPH, RHIA, CPHQ, recently conducted a study to assess the relationship between cancer registry data and care coordination. The study provided information on how cancer registry data are being used and assessed the quality of data being collected. It also explored the availability of the data that are necessary for complete cancer registry data collection.

“Our study identified the purpose and use of cancer registry data. Some of the most used purposes of the cancer registry included continuity of care for timely diagnosis and treatment and survivorship and for administrative reports, quality improvement, and benchmarking and outcomes analysis," Houser says.

The study also assessed the pandemic’s impact on cancer registries. “We looked at confirmed diagnoses of COVID-19, sought information about cancer patient treatment delays due to COVID-19, information about other diagnoses or treatment impacts due to COVID-19, information regarding COVID-19 care provided via telemedicine for patients in the registry, and information regarding cancer patient deaths due to COVID-19,” Houser says. “Some facilities are collecting these data, but some are not. Because the COVID-19 pandemic is so universal and continues to spread, these are important data for cancer registries and care coordination.”

For successful care coordination, complete and accurate data are a must. “One of the intended purposes of a cancer registry is to improve care coordination. By accurately documenting the patient’s cancer journey, further studies and standards of care will assist in the overall continuum of patient care,” Neve says. “Lack of available and accurate data from cancer registries may jeopardize the continuum of patient care.”

McNellis agrees. “While not necessarily on the frontline of current patient care coordination, cancer registries work more on the back end to help with those patients in the future that will have a diagnosis of cancer.”

A cancer registrar for more than two decades, Linette Kallaos, MSHI, RHIA, CTR, an adjunct instructor at UC Clermont College in Ohio who works for a Commission on Cancer (CoC)-accredited cancer program, says the standards defined in the Optimal Resources for Cancer Care: 2020 Standards have a significant effect on care coordination efforts—in particular, those that involve the survivorship program, psychosocial distress screening, and the Rapid Cancer Reporting System (RCRS). “These patient care standards are monitored and reported on during quarterly Cancer Committee meetings,” she says. “By using the CoC standards to surveil patient care coordination, it is the hope of the Cancer Program that the quality of patient care will benefit.”

Kallaos has witnessed the growth of the profession firsthand. One of the changes has been the addition of the RCRS, where cancer programs can submit new and updated cases on a frequent basis.

“When working in the RCRS, registrars have the opportunity to impact patient care through the Alerts Report. The Alerts Report includes cases that could potentially be missing treatment based on RCRS metrics,” Kallaos says. “On occasion, cases are added to the Alerts Report due to a physician inadvertently missing patient treatment or surpassing the allotted days in which treatment must be completed according to a RCRS measure. For a cancer registrar, being able to impact patient care by alerting physicians of a potentially missed treatment is a positive change to their role and an important addition to the focus of the cancer registry.”

Data Management
And while cancer registries make a positive impact on patient care coordination, the gains are not realized without overcoming hurdles. For example, Houser sees distinct challenges with data.

“Data completeness and data quality in cancer registries are two major issues for care coordination. If data in cancer registries are incomplete or not available, that will jeopardize patient care,” she says. “Missing data in the original resources or data that have never been collected initially prohibit registrars from documenting a whole picture of a patient profile in the cancer registry.”

Houser cites data accessibility as another roadblock. “Because patient care is at different locations, multiple electronic health record systems and other sources are needed for complete data. From an informatics point of view, information exchange, or interoperability, is a key to allowing data sharing across different facilities,” she points out.

Kallaos highlights staffing and workload challenges. “With the initiation of the new 2020 CoC standards brings concurrent abstracting and the rapid capture and reporting of data,” she says. “For cancer registrars, concurrent abstracting means capturing case data as they become available or entering the same case multiple times to add patient information. Prior to concurrent abstracting, registries were permitted to abstract cases within six months of the date of diagnosis, so decreasing the time a registrar can take to begin a new case will require additional staff—at least initially.”

According to McNellis, efficiencies and quality control are among the issues currently facing registry coordination and management, noting that the ability to streamline processes is key. She recommends a detailed quality control process in which CTR staff can be audited using all the required CoC data quality fields for data quality control.

Neve mentions lack of staffing as another potential pitfall. “Cancer registries today are often backlogged due to high demand and short supply of resources, which hinder ongoing health care management,” she says.

When it comes to adequate staffing and making data quality a top priority, both McNellis and Neve agree on the necessity for facility executives to be on board.

“When the staffing of the cancer registry department is not where it should be, it can impact the data and data submission to the state accrediting agencies. This can lead to both financial and nonfinancial implications,” McNellis says. “Financially, if facilities are not reporting cancer cases as required by state statutes, there are monetary penalties. If your organization is not accredited, cancer patients could be seeking those facilities that are. From a care standpoint, inadequate staffing can have a negative impact on patient outcomes and survival data.

“When the cancer registry is held in high esteem and it has qualified CTRs performing the abstracting and other functions of the registry, this leads to better care and coordination, which enhances patient satisfaction and ultimately the facility’s reputation.”

Neve notes the importance of upper management investing in the necessary resources to support the efficient and accurate capture of cancer registry data.

Although incorporating cancer registries into care coordination can be difficult, the ongoing development of technology is helping to ease the process. For example, widespread use of EHRs is making the job of collecting and sharing data much less cumbersome. “Clinical decision-support systems built on EHRs provide prompts and alerts to assist providers when making clinical decisions,” Houser says.

Previously slow and arduous processes can now be accomplished much more quickly, Kallaos says. “In the recent past, registry assistants or registrars were required to manually compare monthly patient follow-up lists to the EMR. With the advent of upgraded EMRs, follow-up lists can now be uploaded and electronically matched to the EMR, which saves a lot of time.”

From the patient perspective, Houser says the gains have been significant. “Patient portals and apps provide better communication between patients and health care providers,” she says. “Other technologies, such as Fitbit monitors and Apple Watch, allow patients to conduct self-assessments and measurements.”

Neve has witnessed firsthand how the evolution of cancer registries, care coordination, and data sharing have transformed patient outcomes. “When I first started in this career over 25 years ago, I was a unit secretary in the chemo/infusion room and saw firsthand patients receiving care. My most vivid memory is of a patient receiving Taxol chemo and crashing because the drug was so new and the infusion was done so quickly. With information like that given to health care providers, the standard of care for giving Taxol was created,” she says.

Neve marvels at the important—and sometimes overlooked—role played by cancer registrars. “Many people ask how I can work in such a depressing field. I tell them it’s not depressing. If it weren’t for my work and the data I collect, people would not be surviving cancer,” she says. “In my 25 years, I have seen so much change in care and the promise for early detection. I’m proud to call myself a cancer registrar, and one day we will abolish cancer.”

— Monique Griffin is a writer and a CPC-A.