The Importance of Reliable and Accurate Data

Cancer treatment has evolved from crude and primitive methods to novel and unthinkable therapies among children, adolescent/young adults, and adult patient populations. In recent decades there has been an explosion of cancer treatment research in fields of targeted chemotherapy/precision oncology, genomics, immunotherapy, surgical and radiation techniques, and chemotherapy, which have resulted in more individualized, precise, and effective treatments. Treatment discoveries have given these patients significant improvement in progression-free and overall survival to even cure in many cases.

Assessment of the effectiveness of these therapies is complex, and consequently physicians, researchers, epidemiologists, public health planners, and others need to know how effective these therapies are and, most importantly, what life-threatening complications could arise. How do we assess the effectiveness, complications, and adverse effects of all these treatments? To make meaningful conclusions it is necessary to examine the data in large numbers of patients to obtain meaningful and accurate results.

The National Cancer Database (NCDB) began as a joint quality improvement project between the American College of Surgeons and the American Cancer Society in 1989. The NCDB captures numerous variables (e.g., sociodemographic characteristics, patient health, staging, general information about treatment, hospital characteristics, surgical processes, radiotherapy, systemic therapy, multimodal therapy, complications, and survival). The NCDB—jointly sponsored by the Commission on Cancer (CoC) of the American College of Surgeons and the American Cancer Society—is a nationwide oncology outcomes database for more than 1,500 CoC-accredited cancer programs in the United States and Puerto Rico. Some 70 percent of all newly diagnosed cases of cancer in the United States are captured at the institutional level and reported to the NCDB. Started in 1989, the NCDB now contains approximately 34 million records from hospital cancer registries across the United States. Data on all types of cancer are tracked and analyzed. These data are used to explore trends in cancer care, create regional and state benchmarks for participating hospitals, and serve as the basis for quality improvement.  

What are the current methods available to assess the validity of complex databases? Systematic reviews and meta-analyses have become increasingly important in health care. Clinicians read them to keep up to date with their specialty, and they are often used as a starting point for developing clinical practice guidelines. Granting agencies may require a systematic review to ensure there is justification for further research, and some medical journals are also moving in this direction. As with all research, the value of a systematic review depends on what was done, what was found, and the clarity of reporting. The large number of peer-reviewed articles, reviews, and meta-analyses published in the medical literature confirms the quality of the data and conclusions.

It is of paramount importance that the data collected by NCDB is accurate and reliable so the medical establishment can be confident of the results and conclusions. In 2020, the CoC introduced the Optimal Resources for Cancer Care with the inclusion of Standard 6.1 (Cancer Registry Quality Control Plan). Each surveyed cancer program is expected to have full compliance with this standard.

The purpose of surveying a cancer program is to verify that the cancer program is in full compliance with all CoC Standards, and also to ensure that the Cancer Liaison Physician (CLP), has monitored, interpreted, and provided updated reports of the program’s performance using NCDB data to evaluate and improve the quality of care. At least four times each calendar year, the CLP reports and discusses the facility’s performance and its response related to the accountability and quality improvement measures in the Cancer Program Practice Profile Reports, including data from additional NCDB reporting tools such as the Cancer Quality Improvement Program, the Rapid Quality Reporting System (RQRS), Hospital Comparison Benchmark Reports, and Survival Reports. It is expected that a quality-related audit will be initiated for any of the accountability and quality improvement measures that fall below the required levels of compliance.

Currently, the NCDB is in the process of introducing a more efficient technology implementation and upgrade: the Rapid Cancer Reporting System (RCRS) which will combine and replace the best of the RQRS and NCDB Call for Data submission standards into a new approach of transmitting and managing cancer hospital registry data.

References

1. Cohen JF, Deeks JJ, Hooft L, et al. Preferred reporting items for journal and conference abstracts of systematic reviews and meta-analyses of diagnostic test accuracy studies (PRISMA-DTA for Abstracts): checklist, explanation, and elaboration. BMJ. 2021;372:n265. Published 2021 Mar 15. doi:10.1136/bmj.n265
2. Boffa DJ, Rosen JE, Mallin K, et al. Using the National Cancer Database for Outcomes Research: A Review. JAMA Oncol. 2017;3(12):1722-1728. doi:10.1001/jamaoncol.2016.6905
3. Edge SB, McKellar D, Stewart AK. Using the American College of Surgeons cancer registry to drive quality. J Oncol Pract. 2013;9(3):149-151. doi:10.1200/JOP.2013.000955
4. McCabe RM. National Cancer Database: The Past, Present, and Future of the Cancer Registry and Its Efforts to Improve the Quality of Cancer Care. Semin Radiat Oncol. 2019;29(4):323-325. doi:10.1016/j.semradonc.2019.05.005