Understanding the Needs and Challenges of Cancer Registry Stakeholders

Cancer registry data represent an indispensable tool for researchers and community outreach and engagement (COE) professionals seeking to understand and mitigate cancer burden in cancer center catchment areas and beyond. To provide insights into the opportunities and obstacles for innovation in the population cancer data space, we contrast the needs and challenges of three groups of stakeholders with regard to cancer registry data.

We convened a nationwide panel of 18 population cancer researchers, COE professionals, and central cancer registry officials. We performed qualitative analysis of individual interviews, survey responses, and meeting transcripts to identify the cancer registry data-related needs and challenges of each stakeholder group. We identified distinct functional categories related to registry data applications, and described points of convergence and divergence within each category across the three stakeholder groups.

We completed 8 hours of individual panelist interviews, received 16 survey responses (88.9% response rate), and conducted three meetings of working groups. All stakeholder groups agreed on the value of accurate and representative registry data. Researchers desired granular data (case-level and aggregated by small geographic levels) with more clinically relevant data fields and linked community-level access measures. COE participants valued cancer burden and social drivers of health metrics aggregated at a subcounty level as well as user-friendly data querying and visualization tools. Cancer registry officials described an imperative to comply with mandatory reporting requirements and to protect patient privacy in a setting of resource constraint that can conflict with the data use goals of researchers and COE users.

Population cancer researchers, COE professionals, and cancer registry officials understand the value of registry data, but the priorities of each are misaligned to varying degrees. Further work is needed to understand the elements of successful efforts to expand the utility and use of registry data.