Integrating Cancer Registry and Medicaid Data for Survivorship-Focused Research

The Ohio Cancer Incidence Surveillance System (OCISS) is not part of the Surveillance, Epidemiology, and End Results (SEER) program; therefore, we are unable to leverage the linked data products using the SEER as the backbone to study survivorship in the state of Ohio. Accordingly, we developed a survivorship-focused data infrastructure integrating 1996-2020 data from the OCISS and 2016-2020 Medicaid data, allowing us to examine health care patterns and outcomes in cancer survivors with short-, medium-, and long-term follow-up, defined as those diagnosed with cancer in the years 2016-2020, 2006-2015, and 1996-2005, respectively. Our integrated database included 95,726 cancer survivors and 2,143,554 cancer-free individuals enrolled in Ohio Medicaid during the 2016-2020 period. Only 9.3% of the study population were diagnosed at the age of 29 or younger, while 32.2% and 58.6% were 30-49 and 50-65 years of age, respectively, when they were diagnosed. Of those diagnosed at age 18 years or younger (n=3,501), 33.0% had long-term follow-up, 43.4% medium-term follow-up, and 23.5% had short-term follow-up. Women with history of breast cancer represented 25.9% and 20.7% of long- and medium-term follow-up, respectively, while individuals with gastrointestinal cancers represented 18.0% of short-term follow-up. Survivors with long-term follow-up included 969 men with prostate cancer. The OCISS-Medicaid database provides unique opportunities to address a broad range of questions in the realm of cancer survivorship and health services research and to advance our understanding of the quality of cancer survivorship care among individuals insured by Medicaid, including those with physical and/or mental disabilities with complex socioeconomic and healthcare needs.