Introduction
Timely delivery of patient contact data by population-based cancer registries is vital to cancer-related research participation and representation of diverse patient groups in epidemiological cancer research studies. The California Cancer Registry (CCR) Patient Contact Database (PCDB) is an internal tracking system for cancer cases released to researchers for patient contact studies and is used at the state and regional registry levels. The PCDB tracks availability for patient contact, cases released for patient contact, and outcomes after patient contact (Figure 1). All patient contact studies at the central registry begin after administrative review and approval of respective patient contact study protocol, including the patient consent process and an application for CCR data, including patient selection criteria. As such, for the purposes of this study, start and completion dates of patient contact studies occur after completion of all administrative reviews. Therefore, the time required for administrative review is not considered in this study. We provide an evaluation of the PCDB implemented at the statewide CCR in June 2021, with a focus on workflow efficiency and timeliness.
Figure 1.
Three Main Functions of the Patient Contact Database
Methods
We compared the number of individual steps required to prepare a patient contact dataset before and after the implementation of the PCDB. We estimated net business workdays between patient contact study start and completion for 38 studies, with 19 studies conducted before PCDB implementation and 19 studies conducted after implementation. Net workday averages of the pre- and post-PCDB studies were compared using an unpaired t test.
Results
The workflow pre-PCDB implementation consisted of 10 steps between study start and completion, while the workflow post-PCDB implementation consisted of 5 steps (Figure 2). The 5 steps removed were: (1) create files for regional registry patient contact availability check; (2) secure transfer of files to regional registries; (3) regional registry check for availability; (4) return of available cases by regional registry; and (5) merge of available cases from regional registries. The 5 remaining steps were (1) select list of records meeting study criteria; (2) upload list to PCDB for patient contact availability check; (3) download list of available cases from the PCDB; (4) secure transfer of patient contact dataset to researcher; and (5) upload released list of patient identifiers to the PCDB. We observed a statistically significant difference (P = .0004) in average net workdays between study start and completion before PCDB implementation (n = 19; mean, 51.16; SD, 35.27) and after (n = 19; mean, 16.84; SD, 14.59) (Figure 3).
Figure 2.
Patient Contact Data Release Workflow Pre– and Post–Patient Contact Database (PCDB) Implementation
Figure 3.
Average Net Workdays Between Patient Contact Study Start and Completion Pre– and Post–PCDB Implementation
Conclusion
The implementation of the PCDB at the central registry led to reductions in the number of steps and net workdays required to release data for patient contact studies, improving timeliness of data for researchers.