The goal of collecting and analyzing cancer registry data is to provide the information needed for cancer care specialists, oncologic practitioners, and researchers to assess and improve cancer patient care over time. Cancer registry data must be of the highest quality and the data must be collected in the most standardized manner. As the practice of cancer registry data collection has become standardized and assessed by regional and national data quality edits, so has the process to review the quality of cancer registry data.
Initially, cancer registry data were collected and analyzed on an institutional basis. The information was typed on a paper abstract and only the primary site was coded. Some facilities did code histology. Summary Stage was used almost exclusively and AJCC TNM Stage was in its infancy. A physician on the cancer committee was tasked with reviewing the paper abstract, using the paper medical record. Analysis of data was only used to assess what was happening on an institutional basis.
The origins of cancer registry standards
State cancer registry reporting, the growing use of personal computers in the workplace and the development of cancer registry software programs all started coming together at about the same time. More and more data fields were being coded. Initially, there were no definitive data and coding standards in place. North American Association of Central Cancer Registrars (NAACCR), with other cancer registry professionals and organizations, started developing data reporting standards and codes. Physicians continued to be responsible for the review of cancer registry data, even though they may not have been fully aware of the growing and changing standards for cancer registry data collection.
More and more technology led to increasing changes in cancer registry data collection. Abstracts were no longer “paper abstracts” but were stored in a cancer registry application (app). Physicians most often required the registry staff to print out paper abstracts as they did not know how to navigate the cancer registry programs. Physicians would compare the data on the paper abstract to the data in the paper patient record.
Paper medical records soon were replaced by hybrid records – partially electronic, partially paper. Eventually, the medical record became completely electronic. Preparing hybrid or electronic records for physician review became a growing burden on the registrar. On top of the fact that most physician reviewers still did not have full command of cancer registry reporting rules, the quality review of abstracts became more of a paperwork exercise for registrars with physicians’ signing off with a minimal review.
Guiding principles for cancer registry data quality control emerge in 2016
In 2016, the regulation found in Cancer Program Standards: Ensuring Patient-Centered Care for the quality control of registry data was Standard 1.6. In Standard 1.6, National Cancer Institute Designated Comprehensive Cancer Center Programs (NCIP), facilities with multiple CTRs were allowed to have other CTRs review the abstracts. Physician participation was still required in NCIP facilities, particularly in conflict resolution, but physician review of abstraction was not necessary if the registry staff was robust enough to assess the quality of their abstracts. All other categories required physician review of registry data.
In 2018, Heidi Nelson, MD, FACS, was named Medical Director of the American College of Surgeons (ACS) Cancer Programs and Connie Bura became the Administrative Director. One of their main focuses was to standardize and harmonize the functionality of the programs housed under the ACS Cancer Programs umbrella. They also had the goals of making all requirements and standards for accreditation of all programs to be meaningful, worthy of the time and effort needed to meet the standards, and lead to improved quality of cancer patient care. They did ask for recommendations and were receptive to listening to recommendations and the reasoning behind them. They were willing to make changes when these changes would meet the goals mentioned above.
In 2020, the 2020 Standards: Optimal Resources for Cancer Care became the guiding principles for cancer programs. Standard 6.1 Cancer Registry Quality Control is now the current standard for quality assessment of cancer registry data. There are multiple changes to this standard. One change that will impact cancer registries is that the review for quality data can be done by not only a physician but also by a CTR, Advanced Practice Registered Nurse, Physician Assistant, fellow, or resident. The only caveat is that a CTR cannot assess his/her own work. Finally, CTRs can assess each other’s work as part of the annual assessment of abstracts! This was a suggestion made by at least 1 CTR, if not more, as a way of making this exercise more meaningful and making better use of cancer committee physician representatives.
Where cancer registry quality control is heading
Join us at 1 pm ET on June 29, 2021, for our latest webinar, Where Cancer Registry Quality Control is Heading: Dissection of the Standard 6.1 – Cancer Registry Quality Control, to delve further into the 6.1 Cancer Registry Quality Control Standard as found in 2020 Standards: Optimal Resources for Cancer Care with our Oncology Data Services team.
Cancer Program Standards: Ensuring Patient-Centered Care, 2016 Edition; American College of Surgeons, Chicago, IL 2015, pp 35-36
Optimal Resources for Cancer Care, 2020 Standards; American College of Surgeons, Chicago, IL 2019, pp 57-58