Toward Precision
Cancer Surveillance

Group photo of approximately 50 meeting attendees sitting/standing in 5 rows in corner of meeting room at NCI Shady Grove

The Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute (NCI) held its annual SEER Data Management System (SEER*DMS) Face-to-Face (F2F) Meeting on September 26-28, 2018. The meeting brought together members of the cancer surveillance community to discuss SEER*DMS enhancement projects, address relevant questions, and encourage collaboration. Representatives from 22 registries participated in person or online, and the event occurred at the NCI Shady Grove campus in Rockville, MD.

The F2F Meeting focused on updates from the NCI SEER Program and SEER*DMS workgroups, as well as discussions on cancer surveillance challenges and potential solutions forward. These challenges include: (1) the large amounts of data that must be converted from different formats; (2) the numerous information sources; and (3) the need to support new and complex infrastructure that integrates new types of data, including genomics, longitudinal treatment outcomes, and pharmacy data.

NCI SEER Program Updates

A few updates from the NCI SEER Program included the following:

The NCI is working with the Department of Energy to create tools that automate the processing of site, histology, grade, laterality, and behavior information. Version 4 of their application program interface (API) is currently being developed. The API has been run on 3.2 million pathology reports from across 12 different registries for initial analysis and API refinement. These reports were linked to SEER-reportable cases. The results from automated coding are being compared to manual coding results. A detailed analysis will also be conducted to examine patterns by histology and site. It is planned that the API will be gradually phased in for registries that use SEER*DMS.

The NCI is working with Westat, the Nielsen Norman Group, and cancer registries to understand how to enhance the usability of SEER*DMS. The team visited two registry sites to conduct observational studies. Twenty-six registry participants were observed, and over 10,000 observations were collected. Based on findings from the visits, prototypes will be created and tested with staff at registries. NCI will seek to implement small and manageable changes to SEER*DMS to enhance efficiency and quality within the system.

The Virtual Pooled Registry (VPR) aims to provide a national registry that links study cohorts and clinical trial participants. The NCI Division of Cancer Epidemiology and Genetics conducted a pilot study of the VPR with a cohort of radiation technicians, and linkages were performed with 45 registries. These linkages increased case ascertainment, improved completeness of data, and provided a significant cost savings. The next steps are to complete the U.S. Radiation Technician Cohort Study and finalize a central IRB contract and the linkage software Match*Pro. The next VPR pilot project will evaluate linkages to the Childhood Cancer Survivors Study cohort.

SEER*DMS Workgroup Updates

At the F2F meeting, SEER*DMS workgroups shared updates on the status of their projects. The Meaningful Use 2 Workgroup has been analyzing how electronic health records (EHRs) can enhance cancer surveillance data. From tests, EHRs have been found to supplement existing surveillance data, although data duplication was an issue. Algorithms are being tested to enhance EHR utility and reduce duplicate reports.

The Auto-consolidation Workgroup aims to increase automation in SEER*DMS and decrease the burden of manual work for data processing at registries. The workgroup defined a process for defining and testing new auto-consolidation rules. Rules were defined and implemented for two data items (Type of Reporting Source and Diagnostic Confirmation). The group reviewed and prioritized data items and continues to define rules for the SEER-required data items. This process includes a review of coding instructions and analysis to evaluate the agreement of outcomes between auto-consolidation and manual consolidation.

The Claims Workgroup aims to standardize processes for working with claims across registries, maximize automation, facilitate research access to source claims, and expand capture. Currently, the group is considering automation with a focus on approaches for identifying missing treatment information.

The Data Linkages Workgroup is working on rules to reduce linkage burden and approaches for handling unlinked data, backing out of automation, and handling unmatched patients. This group is working on a linkage to increase the completeness of Social Security Number information in registry data. This will help obtain better information on race/ethnicity, biomarkers, treatment, and recurrence, as well as enhance case finding and automation.

Other Topics

A productive discussion at the F2F Meeting focused on the use of pathology report data. Participants were divided into four small groups; each small group later shared a presentation on their discussion with the larger group. The small groups discussed: (1) coding and consolidation of pathology report data, (2) efficient use of pathology reports for case findings, (3) classifying pathology reports, and (4) providing data back to source facilities. Last, meeting participants discussed coding missing information in pathology reports and reporting of veterans’ cancer data.

More About SEER*DMS

SEER*DMS is a system that provides support for all core cancer registry functions, including data importation, editing, linkage, consolidation, and reporting. More than half of the registries that participated in the 2018 F2F meeting currently use SEER*DMS, and several more are in the process of transitioning to it. Overall, SEER*DMS aims to improve cancer surveillance cost efficiency, data quality and consistency, and knowledge sharing among registries, as well as reduce duplication of work.