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September 2017 VOL 8, NO 9
Cancer Registries: An Excellent Resource for Effective Navigation
An Interview with Barbara Dearmon, BS, CTR, of the National Cancer Registrars Association
The National Cancer Registrars Association (NCRA) is a nonprofit organization representing more than 5900 cancer registry professionals and certified tumor registrars. The mission of NCRA is to serve as the premier education, credentialing, and advocacy resource for cancer registry professionals.
Navigators often utilize the information collected by their institution’s cancer registry as a means of understanding the population they serve as well as a resource to proactively identify potential barriers to care for that population. Therefore, it is critical for navigators to understand the role of cancer registries and the wealth of information they can provide.
At a glance, a cancer registry is an information system designed for the collection, management, and analysis of data on patients with a cancer diagnosis.
Cancer registries can be classified into 3 general types:
- Hospital-based registries maintain data on all patients diagnosed with and/or treated for cancer at their facility and report cancer cases to the central or state cancer registry
- 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
Maintaining a cancer registry ensures that health officials have accurate and timely information that can be used for treatment, research, and educational purposes. Cancer registries capture a wide range of information, including demographics (age, gender, race/ethnicity, birthplace, and residence); medical history (physical findings, screening information, occupation, and history of a previous cancer); diagnostic findings (types, dates, and results of procedures used to diagnose cancer); cancer information (primary site, cell type, and extent of disease); cancer therapy (surgery, radiation therapy, chemotherapy, hormone therapy, and/or immunotherapy); and follow-up (annual information about treatment, recurrence, and patient status).
The data collection enables healthcare facilities to monitor patient-centered care, quality treatment measures, patient outcomes and satisfaction, provide follow-up information for cancer surveillance, and analyze referral patterns. Public health officials analyze the data to monitor trends; improve screening programs; support research; calculate survival rates; allocate resources at the community, state, and regional levels; develop educational programs for healthcare providers, patients, and the general public; report cancer incidence; and evaluate efficacy of treatment modalities.
A cancer registrar gathers the complete history for patients with a cancer diagnosis. Registrars work closely with physicians, administrators, researchers, and healthcare planners to provide support for cancer program development, ensure compliance with regulatory guidelines for accredited programs, and serve as a valuable resource for cancer information with the ultimate goal of preventing and controlling cancer.
The publishers of the Journal of Oncology Navigation & Survivorship (JONS) were fortunate to speak with the current president of NCRA, Barbara Dearmon, BS, CTR, about the role of cancer registries and the implications for oncology nurse navigators.
JONS Thank you for talking with us, Barbara. To begin, can you please define the role of a cancer registrar?
Ms Dearmon Cancer registrars are information specialists who capture the complete history, diagnosis, treatment, and health status of every patient with cancer in the United States. The data we provide help support researchers, healthcare providers, and public health officials to better advance cancer care and treatment as well as enable them to conduct research. The information also helps improve cancer prevention and screening detection programs throughout the United States.
JONS I understand the NCRA offers credentialing for cancer registrars?
Ms Dearmon Yes, in addition to promoting education and advocacy, part of the mission of NCRA is to promote credentialing for cancer registry professionals. The Certified Tumor Registrar, or CTR, is the credential for cancer registrars. NCRA’s Council on Certification develops and administers the CTR exam.
JONS We’d like to hear about your career path.
Ms Dearmon I started at Bayfront Medical Center in St. Petersburg, Florida, in the late 1980s as a file clerk in the cancer registry department. At that time, everything was manual. In my more than 30-year career, I have seen great changes in the cancer registry profession. We have moved from manual processes to computerization and automation. We have also expanded significantly the core data items captured. I have worked as a coordinator at Bayfront Medical Center, an abstractor at Moffitt Cancer Center in Tampa, Florida, and I have been a tumor registrar at Manatee Memorial Hospital in Bradenton. I landed at St. Vincent’s HealthCare in 2007, managing 1 facility. I now oversee 3 facilities.
My role at St. Vincent’s is diverse. I maintain compliance for our Comprehensive Community Cancer Program accredited by the Commission on Cancer (CoC) and the Breast Health Center Program accredited by the National Accreditation Program for Breast Centers (NAPBC). My role is to monitor compliance with the standards and to maintain the supporting documentation.
I also represent the cancer registry on several hospital committees. I am responsible for managing registry operations, including abstracting, staffing, and ensuring that we maintain cancer incidence reporting to the state that is in accordance with the Department of Health guidelines for all 3 facilities.
JONS Can you elaborate on your role as an abstractor?
Ms Dearmon An abstractor collects core data items according to regulatory standard setters’ guidelines. These items include demographics, primary site of disease, cancer stage, extent of disease, treatments, and the date the treatment was administered. It is very specific information that is extracted from the electronic medical record. We capture the information in a unified, standardized way that is set forth nationally.
JONS What data do registrars report, and to whom do they report the data?
Ms Dearmon We are required by law to report cancer incidence. The information is encrypted and sent to the State of Florida. Since we are a CoC-accredited program, we are also required to send the data to the National Cancer Database annually.
JONS Can you talk a little bit about case finding?
Ms Dearmon For case finding, we look at the disease index, pathology reports, and any inpatient and outpatient admissions relevant to cancer diagnoses. We have a standard case finding list of ICD-10 oncology codes that we review on a regular basis to determine reportability.
The coders are key to case finding, because what they code derives our disease index, which provides the raw data needed to determine which cases are reportable based on national rules. To report, the cancer must be active or the patient is actively under treatment.
JONSThe data collected are obviously excellent information for researchers, but it can also be useful for nurse navigators to understand the facility’s patient population. In considering registry data that are shared with navigators, how does the role of the registry impact patient care?
Ms Dearmon Cancer registrars can provide raw data to inform navigators about the patient population and to assist navigators with identifying barriers to patient care.
JONS Can you share a story that demonstrates how a registry can identify a barrier to care?
Ms Dearmon A barrier within the cancer registry itself is not having access to the treatment data delivered elsewhere, since charts are sometimes fragmented. Data collection is critical to being able to monitor patient care and quality measures. The hospital can be delivering care, but the data may reflect a different story. For example, when I first took this position, our core measures were low, and it looked like patients were not being treated according to national norms, but that was incorrect. The patients were being treated according to national norms; the registry just did not have access to the information. We learned that the registry data were incomplete because we did not have access to radiation oncology or medical oncology treatment information. Many of our practices, like medical oncology and radiation oncology, are subcontracted, so we do not own the records. As a result, we did not have access to the information.
To remedy the situation, we established a business agreement with medical oncology to access the information to reflect the true status of how the patient is being treated. Now that we are able to collect the information, we can provide more accurate, reliable, and quality data to the administration.
JONS Can you talk about compliance with CoC standards?
Ms Dearmon Accreditation by the CoC demonstrates a cancer program’s commitment to providing high-quality, multidisciplinary, patient-centered cancer care. The CoC standards set the framework for a program. Standards 4.4 and 4.5 are the accountability and quality measures. They require that we monitor our treatment outcomes covering 9 cancer sites, including breast and colorectal cancer patients. The CoC sets an estimated performance rate. If we are not treating according to that estimated performance rate, improvements need to be made to maintain the accreditation.
JONS Do you have a navigation program at St. Vincent’s or any of the affiliated hospitals?
Ms Dearmon St. Vincent’s HealthCare Ascension has 5 nurse navigators and 1 nurse survivorship navigator. When I started in 2007, we had none. The CoC and NAPBC programs require that we have patient navigation programs in place to assist our patients in overcoming barriers to receiving cancer care. This process is evaluated annually.
JONSCan you talk about the role of navigators at your institution?
Ms Dearmon I feel strongly that the role of navigators is very important in accredited programs. Navigation helps to monitor continuum of care and to assist patients through their cancer journey. Navigators can also help organizations with monitoring health disparities, identifying barriers to care, and providing information on facility-based and community-wide resources available to patients.
JONS Can you describe how you work with those navigators? Do they access your department regularly?
Ms Dearmon Yes, they do access cancer registry data. We work closely with navigators by providing information on cases presented at cancer conferences and sharing discussions on care plans for each case. This information allows navigators to assist patients with scheduling appointments. Navigators have requested a breakdown of cases by primary site on patients initially diagnosed and/or treated at our facility (analytic cases) to determine which population to focus their efforts on.
JONS Some of the first advice new navigators are often given is to become “best friends” with their cancer registrars. Can you discuss the importance of that relationship?
Ms Dearmon I think it is very important for the nurse navigators to build a good relationship with the cancer registrar to gain a better understanding of their role in serving on the cancer program team. In addition, the cancer registrar can provide insights on meeting the standards related to patient navigation as well as psychosocial services and survivorship, because cancer registrars are a key point of contact for accredited programs. They can provide clinical staff with the resources they need to assist them with meeting the standards.
JONS Do you have any advice for navigators on how to work with their registrar?
Ms Dearmon Navigators should work with cancer registrars to access the data needed to help them assess the patient population and identify barriers to care.
JONS Thank you very much for your time today, and continued success to you in your future endeavors.
Ms Dearmon Thank you.
Ms Dearmon earned her Certified Tumor Registrar (CTR) credential in 1990 and completed her bachelor of science degree in healthcare services at the University of Phoenix in 2009. She is currently the Oncology Support Services Manager at St. Vincent’s HealthCare Ascension in Jacksonville, FL. Earlier this year, she was installed as president of the National Cancer Registrars Association.
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