January 5, 2022
The Commission on Cancer (CoC) has played a vital role in elevating the role of cancer registrars. Cancer registrars had their start within cancer programs, mainly driven by the CoC. The cancer registrar role has evolved through the years from a position once described as “secretarial” to that of a respected contributing member of the health care team. With support and encouragement from the CoC, registrars have walked a path of professional growth, taking important steps along the way.
The American College of Surgeons (ACS) introduced the concept of the registry with the establishment of the Registry of Bone Sarcoma in 1921. Then, in 1922, the College established the Committee on the Treatment of Malignant Disease with Radium and X-Ray, which published standards for the evaluation of cancer clinics and registries. Jumping forward in the timeline, in 1965 the committee was renamed the Commission on Cancer.1
In 1956, hospital registries and the registrar profession took a major step forward when the CoC supported the development of hospital registries by requiring a cancer registry for accreditation. According to the Manual for Cancer Programs, published in 1954, the registry requirement went into effect January 1, 1955.2 The impetus for requiring registries for accreditation was based on the need to review data on the outcomes of cancer treatment. This outcomes information would enable the hospital and physicians to gain a better understanding of how tumors develop and are best treated.
One of the first manuals was the Handbook for Cancer Registry Secretaries, which the ACS published in 1962.3 Some registrars might take issue with the depiction of their work as purely administrative, but it is important to recognize this was just the beginning of the profession.
Another step forward was the publication of the Manual for Cancer Programs in 1966. The manual listed five basic standards, including the cancer registry. The standards for approval stated, “Approval limited to the registry program only is predicated on the intent of the hospital to develop a cancer program with regularly scheduled clinical conferences and other requisites for a comprehensive program.” 4 This standard underscores the integral role of the registry and the registrar in cancer programs. No cancer program could be without a registry and registrar; in fact, many programs started with the registry and then added the clinical components, making it quite a testament to the essential nature of the registry as foundational to a cancer program. The manual also included a cancer registry abstract form.
Changes were happening in the U.S. in the early 1970s with regard to cancer. The National Cancer Act of 1971 went into effect, and as a result, the National Cancer Institute (NCI) created the Surveillance, Epidemiology, and End Results (SEER) program in 1973.5,6
The registry profession took a giant step forward in 1974 with clear guidelines outlining the requisites of a cancer registrar. There was an understanding of the importance of not just getting the job done, but the quality and commitment needed to make the work product meaningful to the medical community. The registrar role could no longer be filled by anyone available, but rather by someone who had the knowledge to do the job correctly. The CoC published the Cancer Registry Manual in 1974, which described the background necessary for the registrar position:
Thus, it is important to realize that high standards of qualifications and the higher salary required for a better-qualified person will be more than compensated for in efficiency, both in abstracting of the patient record and in the subsequent reporting of data to the medical staff.7
The registrar profession took another leap forward with the advent of computerization of registries. Having computerized codes delineated for the information the registry was collecting was a major move toward accuracy, and it had a tremendous effect on the registrar. Before this change, the cancer registrar completed the registry abstract by describing in a brief narrative the information contained in the medical record. There is a big difference between having the knowledge needed to write down the name of the operation performed, for example, and having to assign an appropriate code to that procedure from a list of choices.
The 1981 Cancer Program Manual: A Supplement on the Tumor Registry was one of the first manuals to promote coding of data items instead of text.8 Though designed for the computerized registry, it was suggested that it be applied to manual registries as well. Not all programs immediately adopted this format, and some training programs thought coding did not apply to manual registries. Everyone soon learned that coding was the future, and these new codes were applied to all registries. This step forward by the CoC wasn’t just about coding or computerization; it was actually a major leap forward in accuracy and quality of data. Registrars could no longer just type explanatory text, but rather had to make a sometimes complicated and difficult choice between code numbers.
This new expectation created a big change in registrar training programs and education, as registrars had to have a better understanding of this information in order to assign an accurate code. Hence, registrars needed a better clinical foundation to enter the profession and more specific education to understand the nuances of the data being abstracted for each cancer case. Along with these coded data items, in 1981, the CoC developed the Cancer Surveillance System (CanSUR®) computer software for registries, which represented the initial push to get registries to shift from manual to computerized records.
Around this time, other factors were at play that would change the registry profession and the work of the cancer registrar. The initiative to set up state registries in the early 1980s shed new light on the valuable data in hospital registries and how state data would be useful in identifying specific health care trends happening in their state. This movement heightened the awareness that computerized registry data would make it much easier for a state to integrate the information being received from multiple hospitals. It would also be critical in the effort to analyze all of this information on the state’s population.
During this time the need for specific, structured data was becoming more apparent. The CoC stepped up the registry data requirements by adding American Joint Committee on Cancer (AJCC) staging. This staging system was more complex than the existing summary stage being used in registries for the needs of the surveillance community. AJCC staging brought registries in line with the staging physicians needed to monitor patient care and outcomes. AJCC breast cancer staging was implemented as a requirement of CoC-accredited programs in 1982, with more disease sites to follow in subsequent years. If the staging was omitted from the medical record, registrars were to assign the stage in the registry database.
AJCC staging relies heavily on an understanding not just of anatomy, but also the practice of medicine. Registrars first had to understand the difference between the diagnostic workup, which leads to clinical staging, and the surgical treatment required for pathological staging. Registrars were no longer simply documenting separate pieces of information. Clinical staging encompasses the physical exam, imaging, and other information, and registrars had to carefully consider how to use each of those pieces together, especially when they provided disparate information. The same holds true for pathological staging, where registrars needed to use information from multiple sources—the diagnostic workup, the surgeon’s operative findings, and the pathology report—and then understand how to put these pieces together to assign staging. These changes in data requirements made clear that cancer registrars needed a certain threshold of knowledge and a basic level of competence to do their jobs.
The National Cancer Registrars Association (NCRA), the membership organization for registrars chartered in 1974, established the Certified Tumor Registrar (CTR) credential in 1983, according to Cancer Registry Management: Principles and Practices for Hospitals and Central Registries, Fourth Edition, published by NCRA.9 This credential allowed registrars to show their basic level of competency, and it allowed employers to be assured the registrars they hired had this base-level knowledge.
The last milestone in this journey for cancer registrars and their professional path with the CoC occurred in 2015. In that year, the CoC strengthened the registry component of the cancer program by requiring case abstracting to be performed by a CTR, thereby solidifying the importance of the certified registrar.
Registrars owe a big thanks to the CoC for its support throughout these many years for cancer registrars and the cancer registry profession.