Primary Submission Category: Bioethics
Patient Perspectives on the Use of State Cancer Registries for Population Health Research
Authors: Lynette Hammond Gerido, Winston John-Mark,
Presenting Author: Regan Manning*
Background:
Population health research increasingly relies on big data repositories and artificial intelligence (AI) to study complex issues. State cancer registries remain a valuable resource in the data ecosystem, offering critical incidence and demographic information that can be integrated with AI algorithms to advance disease surveillance, precision medicine, and culturally tailored interventions. However, while such registries are foundational for data-driven solutions, ethical frameworks and patient perspectives about consent, privacy, and transparency remain underexplored. The purpose of this study is to 1.) assess cancer patient awareness of state cancer registries, 2.) explore patient perspectives on use of state registry data for research, (3) identify state-specific policies governing data usage, and 4.) identify gaps between patient perspectives with policies and research practices.
Methods:
This is a two-stage qualitative study consisting of a systematic review followed by qualitative interviews. First, we conducted a systematic review of peer-reviewed articles published in Pubmed and Embase from January 2013 to May 2024. Development of the search terms aimed to isolate articles which focused on the analysis of a registry’s function and data practices related to research, rather than those which utilized a registry for an epidemiological study. Search terms were constructed around three main themes: state policies, data sharing and ethics. A combination of search terms with common Boolean operators were used and combined with MeSH terms and appropriate permutations for each database. Search findings were imported into the reference management software (Zotero Version 6.0) then uploaded into Covidence where two reviewers independently screened the titles and abstracts (13097 articles). A third reviewer resolved conflicts and moderated consensus discussions. The full-text review of the 102 screened articles is anticipated to be completed in April 2025 when we will extract the final corpus for content analysis. Second, in May 2025 we will interview adult cancer survivors whose records would be mandatorily stored in the state cancer registry. The interview transcripts will be thematically analyzed to capture awareness levels, perspectives about cancer surveillance, use of registry data for research, and opportunities for patient-centered engagement in policy implementation and research design.
Results:
Preliminary findings indicate that many participants are unaware of state cancer registries and mandatory reporting requirements. Participants express a need for transparent data management and responsible use of emerging analytics tools. Through this study, we expect to highlight the diverse ways state registries are utilized in population genomics, illuminate barriers (e.g., data completeness, inconsistent consent protocols, governance restrictions), and uncover opportunities for improving collaboration between researchers, registries, and patients.
Conclusion:
Integrating the priorities expressed by cancer patients in the research practices of state cancer registries can foster trust and ensure that advanced analytics, such as those used in genomics and pharmacogenomics, align with patient values. Lessons learned from state cancer registries can guide broader cross-disciplinary efforts to harness these large population data repositories for population health research.