Cancer Registrars and Data Curation

Michele Webb, CTR Oncology Leave a Comment

Cancer Registrars and Data Curation

Technology has come a long way! With a single click, we can have items delivered to our doorstep, catch a ride to the airport, or stay connected with family or friends anywhere in the world. Many of these technological advances add convenience to our lives but let us consider how technology helps cancer registrars affect lives.  

Cancer Registrars have traditionally performed labor-intensive, manual data collection that starts with a visual review of multiple reports found in the paper or electronic medical record. Data is captured, one element at a time, coded, and entered into a case record, or abstract. The process is complicated by the registrar’s inability to access all the data sources, making it impossible to ensure the completeness and accuracy of the information.

However, innovative technology is available that supports a broader range of clinical, research, quality improvement, administrative, and educational initiatives. There is an obvious need for careful and continuous curation of oncology data fields, regular updates to the databases and reporting standards, and a perpetual focus on quality and performance improvement. While the cancer registry supports multiple projects, linkage with external datasets is limited or non-existent. Data curation and modeling strategies are used to remedy these limitations.

Data modeling complements the data curation process through a framework that guides how data sets are accurately and efficiently integrated into cancer informatics applications. Data curation establishes the process used to ensure the integrity, privacy and security that makes it easier to find or verify data from multiple sources. Data curation enhances registry data by processing greater volumes of information. But organizations struggle with updating their systems and implementing innovative programs or resources to get the job done. In addition, cancer registrars are concerned about what these advances in technology and data curation mean and how it will impact their work in the future.

Data curation is a methodology used to process and manage information to make it more meaningful and useful. Data curators, including cancer registrars, collect data from diverse sources and integrate it into information management systems that are collectively far more valuable than their independent parts. Data curators verify the accuracy and integrity of the data, classify it according to the appropriate guidelines, audit and ensure its completeness, preserve, and maintain it for longitudinal use, and facilitate its analysis for clinical and treatment outcomes and strategic initiatives.

In addition to reducing redundancy and costs, data curation and linkage enhances the long-term value of cancer registry assets by:

  • Making machine learning more effective (i.e., artificial intelligence, natural language processing)
  • Reducing or eliminating data silos that were not interchangeable or otherwise not accessible
  • Educating patients, families and healthcare professionals using data reported in near real-time
  • Ensuring data quality by reducing human error

“Through the curation process, data are organized, described, cleaned, enhanced, and preserved for use, much like the work done on paintings or rare books to make the works accessible now and in the future.” - Inter-University Consortium for Political and Social Research (ICPSR)

Data curation is already available in e-Path and other innovative programs and applications. Clinicians, researchers, and healthcare organizations are starting to recognize their data as a corporate asset and understand that they cannot continue to blindly “store up” large databases without developing methods to transform them for their present or potential value. In addition, data curation leverages the cancer registrar’s expertise and knowledge of the assets.

Data curation requires a significant investment in finding the right people to curate the process and information and to give them the right tools. This presents many challenges as well, but the cost of not investing in the technology and cancer registry expertise will not work either.

Data curation is a critical skill that should be a focus for cancer registrars today. To avoid self-obsolescence, registrars must invest in professional education and learning activities that support advances in technology, artificial intelligence, and natural language processing methods. By reducing redundancy and eliminating inefficient and expensive manual processes, cancer registrars will continue to influence the lives of the healthcare professionals and patients they serve.

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