Antonio Daniel, Burus Todd, Manning Tarneka M, Gurley Michael J, Di Salvo Giorgio, Heneche Jorge Andres, Passaglia Carolyn, Kocherginsky Masha, Simon Melissa A
Robert H Lurie Comprehensive Cancer Center, Northwestern University.
Community Impact Office, Markey Cancer Center, University of Kentucky.
Prev Oncol Epidemiol. 2024;2(1). doi: 10.1080/28322134.2024.2388564. Epub 2024 Aug 17.
National Cancer Institute (NCI) designated cancer centers are entrusted with assessing the cancer burden within their catchment areas and using this information to guide research and outreach efforts. Data visualizations, like Cancer InFocus, have emerged as essential tools for facilitating this effort. Integrating clinical trial accrual data can further enhance our understanding of the catchment area. However, these data must be de-identified in accordance with the Health Insurance Portability and Accountability Act (HIPAA). This study introduces a de-identification method through geographic aggregation, ensuring HIPAA compliance and enabling comprehensive catchment area surveillance.
Home addresses of patients enrolled in clinical trials at an NCI-designated Comprehensive Cancer Center were geocoded to census tracts. Tracts with less than 20 accruals were merged using the R geographic aggregation tool. A risk assessment was conducted to ensure low re-identification risk. Accrual rates were calculated and integrated into Cancer InFocus.
Successful aggregation exceeded the 20-patient threshold for all merged tracts with low re-identification risk. Disparities between clinical trial accruals and social determinants of health were identified.
The geographic aggregation method, compliant with HIPAA standards and integrated with Cancer InFocus, can enhance catchment area surveillance, furthering cancer research and outreach by pinpointing area-specific needs.
美国国立癌症研究所（NCI）指定的癌症中心负责评估其服务区域内的癌症负担，并利用这些信息指导研究和推广工作。像“聚焦癌症”这样的数据可视化工具已成为促进这项工作的重要手段。整合临床试验入组数据可以进一步加深我们对服务区域的了解。然而，这些数据必须根据《健康保险流通与责任法案》（HIPAA）进行去识别处理。本研究介绍了一种通过地理聚合进行去识别的方法，确保符合HIPAA规定，并实现对服务区域的全面监测。
将在一个NCI指定的综合癌症中心参加临床试验的患者家庭住址进行地理编码，转换为普查区。使用R语言地理聚合工具合并入组人数少于20人的普查区。进行风险评估以确保重新识别风险较低。计算入组率并将其整合到“聚焦癌症”中。
对于所有重新识别风险较低的合并普查区，成功聚合后的人数超过了20人的阈值。发现了临床试验入组情况与健康社会决定因素之间的差异。
这种符合HIPAA标准并与“聚焦癌症”集成的地理聚合方法，可以加强对服务区域的监测，通过确定特定区域的需求来推动癌症研究和推广工作。
