Improving Precision of Do Not Contact Codes: Results of a Manual Review to Inform Coding and Case Contact Procedures.

Introduction: Central cancer registries are responsible for managing appropriate research contacts and record releases. Do not contact (DNC) flags are used by some registries to indicate patients who should not be contacted or included in research. Longitudinal changes in DNC coding practices and definitions may result in a lack of code standardization and inaccurately include or exclude individuals from research. Purpose: We performed a comprehensive manual review of DNC cases in the Utah Cancer Registry to inform updates to standardization of DNC code definitions, and use of DNC codes for exclusion/inclusion in research. Methods: We identified 858 cases with a current or prior DNC flag in the SEER Data Management System (SEER*DMS) or a research database, with cancers diagnosed from 1957-2021. We reviewed scanned images of correspondence with cases and physicians, incident forms, and comments in SEER*DMS and research databases. We evaluated whether there was evidence to support the current DNC code, a different DNC code, or insufficient evidence for any code. Results: Of the 755 cases that had a current DNC flag and reason code in SEER*DMS, the distribution was as follows: 58%, Patient requested no contact; 20%, Physician denied; 13%, Patient is not aware they have cancer; 4%, Patient is mentally disabled [sic]; 4%, Other; and 1%, Unknown. In 5% of these cases, we found evidence supporting a different DNC reason code. Among cases included because of a prior DNC flag in SEER*DMS (n = 10) or a DNC flag in a research database (ie, cases with no current DNC flag or reason code in SEER*DMS, n = 93), we found evidence supporting the addition of a SEER*DMS DNC flag and reason code in 50% and 40% of cases, respectively. We identified DNC reason codes with outdated terminology (Patient is mentally disabled) and codes that may not accurately reflect patient research preferences (Physician denied without asking the patient). To address this, we identified new reason codes, retired old reason codes, and updated current reason code definitions and research handlings. Conclusion: The time and resource investment in manual review allowed us to identify and, in most cases, resolve discordance in DNC flags and reason codes, adding reason codes when they were missing. This process was valuable because it informed recommended changes to DNC code definitions and research handlings that will ensure more appropriate inclusion and exclusion of cancer cases in research.

Improving Central Cancer Registry Surveillance through Interstate Data Exchange of Electronic Pathology Reports.

When a cancer case is diagnosed or treated in one US state, but the patient resides in another, the case report abstract is shared with the central cancer registry in the state of residence through interstate data exchange. However, the records shared may not include pathology reports. Cases diagnosed in another state that would be ascertained only from pathology reports may thus be missed. Utah Cancer Registry received many electronic pathology (e-path) records for nonresident cases that were not being shared. In 2019, Utah Cancer Registry implemented workflow changes and created a novel data extract process to share e-path records in a North American Association of Central Cancer Registries (NAACCR) HL7 format. Utah Cancer Registry shared e-path records for an estimated 2,773 cases with other states for the diagnosis year 2018. Of these cases, both an e-path record and NAACCR-format abstract were shared for 1,709 (61.6%), whereas e-path record only was shared for 1,064 (38.4%). The largest number of e-path records went to 2 adjacent states: Idaho (n = 1,084) and Wyoming (n = 621). Receiving registries reported success importing the files. The e-path data stream resulted in ascertainment of 96 new cases for Idaho and 89 for Wyoming for diagnosis year 2018. Whereas most shared e-path records represented cases already known to the receiving registry, registry staff provided feedback that it was beneficial to obtain the additional documentation. Linking and reviewing the shared e-path records did represent additional workload. Central cancer registries can adopt this process for sharing e-path records via interstate data exchange to support complete case ascertainment in collaborating states.