Improving Kentucky Cancer Registry Data through Ancillary Data Linkage (SIP 14-017)

The Appalachian region has experienced higher rates of poverty and lower levels of education compared to the rest of the U.S. Incidence and mortality rates for lung, colorectal, ovarian and cervical cancers were also significantly higher in Appalachia. A recent study also showed that the Central Appalachian region had the worst cancer survival compared to other Appalachian sub-regions and the non-Appalachian region. Hence, it is important to understand what factors were associated with the poor cancer survival and how to improve the quality of survivorship among cancer survivors, especially those from Appalachian Kentucky. Linking high-quality cancer registry data with insurance enrollment and claims data from public and private sources is an important approach to improve treatment information, assess adherence to evidence-based quality of care measures and ensure quality survivorship care. The purpose of this project is to build a sustainable Kentucky Cancer Quality and Outcome Research Data System to assess and improve cancer care in the state. Specific Aims: 1) Acquire SEER*Medicare data for the Kentucky cancer cases and negotiate with various stakeholders for permission to perform data linkages with administrative, claims and clinical data from Medicaid files, state employee insurance files and private insurance plan files. 2) Develop algorithms to consolidate linked data to generate comorbidity indices, update diagnosis and treatment data in the cancer registry and populate treatment summaries. Based on the National Quality Forum recommended guidelines, develop quality of care measures for breast and colorectal cancer and produce de-identified analytical data. 3) Evaluate the linked data to address the following research questions: a) Compare treatment summaries between the linked data and the existing cancer registry data. B) Examine patterns of care for breast and colorectal cancer patients in Appalachian and non-Appalachian region and risk factors associated with poor quality of care. C) Identify whether adjuvant therapy delivery rates and timing of therapy (weeks after resection) are associated with observed survival for several GI cancers. We intend to complete the IRB application and get data linkage permission in the first nine months of the project, perform the data linkages and consolidate the linked data in months 10-14 and complete the data analysis and disseminate the results in month 15-18.