Cancer Registry Data Accuracy Saves Lives
More than 1.2 million Americans develop cancer each year and a new cancer is diagnosed every 30 seconds in the United States. We know this because of the data collected by cancer registries.
The accuracy of a cancer registry abstract is and has been paramount to winning the War on Cancer. The National Cancer Act was signed into law, December of 1971. According to Vincent DeVita, M.D. the Director of the National Cancer Institute from 1980 to 1988, the law and the War on Cancer “did everything it was supposed to do.” In fact, the incidence of cancer in the United States started dropping in 1990 and has continued to drop every year since.
So often we think of data accuracy (quality) and productivity as it relates to job qualifications and requirements; overlooking the real reason why we are collecting the data in the first place. The information is imperative to allow scientists and researchers to develop screening, diagnostics and treatments to decrease the frequency, morbidity and mortality of cancer. We know that Central Registries and accrediting bodies use the data in an aggregate form for numerous reasons such as to compare effectiveness of treatments, evaluate approach and procedures and in the development of evidence-based guidelines to name a few.
Some facility administrators may look at the cancer registry as a necessary burden to meet reporting laws and accreditation requirements. There is no direct revenue generation to offset the financial burden. However, savvy administrators understand the importance of leveraging the data as essential to determine operational needs and measure quality of care outcomes. The data may generate revenue overtly via grants, public and private partnerships and physician recruitment. Less tangible but equally impressive uses of the data may save unnecessary financial expenditures on staffing and equipment.
With this in mind, how important is data accuracy and what is an acceptable error rate?
The North American Association of Central Cancer Registries (NAACCR) has set the following requirements for data quality as the Gold Standard:
- Case ascertainment has achieved 95% or higher completeness
- A death certificate is the only source for identification of fewer than 3% of reported cancer cases
- Less than 0.1% duplicate case reports are in the file
- All data variables used to create incidence statistics by cancer type, sex, race, age, and county are 100% error-free
- Less than 2% of the case reports in the file are missing meaningful information on age, sex, and county
- Less than 3% of the cases in the file are missing meaningful information on race (US only)
- The file is submitted to NAACCR for evaluation within 23 months of the close of the diagnosis year under review
In the 2016 Commission on Cancer (CoC) Cancer Program Standards the scope of data quality evaluation is defined as 10 percent of the annual analytic caseload or the maximum of 300 cases annually. In the proposed 2020 Commission on Cancer (CoC) Cancer Program Standards the scope of data quality evaluation is defined as 10 percent of the annual analytic caseload or the maximum of 200 cases annually. What about the other 90% of the cases?
The cost of poor data quality
- Researchers and clinicians make decisions based on erroneous information
- Missed opportunities to improve patient care
- Missed opportunities for funding via grants or partnerships.
- Possible loss of a Certificate of Need (CON)
- Over or under staffing
- Organizational strategic planning based on flawed data
- Rework to repair the abstract
- Delays in reporting to the State or accrediting bodies
- Resubmission of case to the state causing additional work on their end
- Staff shortage due to corrections and not abstracting new cases
- Notification of all those that have used the erroneous data
Winning the War on Cancer depends upon stellar Cancer Registry Data Accuracy. As such, it is incumbent upon our industry to determine reasonable standards for data quality for all cancer registries reporting to state or federal databases. In doing so we must carefully consider the human ramifications of Cancer Registry Data which go beyond just meeting a minimum acceptable error rate. We should also explore the “necessary” or “priority” data items and compare those to data items that have been created for special interest groups or accrediting bodies. The goal should be to get the best possible information with the least financial burden on healthcare institutions to allow for proper staffing and necessary quality control measures.
By: Jennifer Rohleder, BS, CTR and Daniel Land, RHIA, CCS (contributing editor)
- Commission on Cancer, Cancer Programs Standards: Ensuring Patient-Centered Care 2016 Edition, 35-36.
- Commission on Cancer, Cancer Programs Standards Draft revised Standards, May 16, 2019, 46-47.
- Haran C. DeVita: the view from the top. Cancer World June-July 2005, 38-4
- National Cancer Institute Milestone 1971 National Cancer Act of 1971.
- North American Association of Central Cancer Registries. Certification criteria https://www.naaccr.org/certification-criteria/
- Surveillance, Epidemiology and End Results Program. Cancer Facts and War on Cancer 2002.