The historically de-centralized nature of cancer surveillance in the United States, combined with the paramount need for the protection of patient and survey respondent confidentiality, has hampered efforts to perform cancer registry linkages with nationally representative health studies. Expansion of such data linkages has enormous potential for furthering the disparities along the cancer continuum. Since 1986, over two million people have participated in nationally representative health surveys undertaken by the National Center for Health for Health Statistics (NCHS) including the National Health Interview Survey (NHIS). In close collaboration with key NCHS members, Investigators at the University of Miami have recently completed a linkage with NHIS survey data and the Florida cancer registry, the Florida Cancer Data System (FCDS), which annually identifies 6% of all cancer cases in the US. There were over 1.7 million eligible records from the NHIS and 2.5 million eligible records from the FCDS, which resulted in a final linked and greatly enriched dataset of 7,483 cancer cases. This linkage is now housed at the NCHS Research Data Center (RDC) with strict confidentiality controls for indirect analysis access. Our long-term objective is to create a Consortium to perform data linkages utilizing the records from the NCHS surveys with all US cancer registries. Once in place, this Consortium will enable us to create a highly enriched database of an estimated 96,000 or more persons diagnosed with cancer before and after their participation in the nationally-representative NCHS surveys, creating unique cohorts of both cancer survivors and future cancer cases. Prior to undertaking the complex task of building this Consortium, we seek R03 funding to analyze these data for the purpose of demonstrating the utility of the linkage to key stakeholders and to gather data needed for future power calculations. Our study Aims include: 1) Document health behavior, health and morbidity status of FCDS-identified cancer survivors;perform a multivariable comparison with those cancer-free at the time of their NHIS interview;2) Document predictors of cancer onset in those cancer-free at the time of their NHIS interview;3) Document changes in mortality trends of cancer survivors and among participants who go on to develop cancer;4) Disseminate study findings to key stakeholders through presentations and publications in targeted peer-reviewed publications to promote development of the Consortium.
The historically de-centralized nature of cancer surveillance in the United States, combined with the paramount need for the protection of patient and survey respondent confidentiality, has hampered efforts to perform cancer registry linkages with nationally representative health studies. To demonstrate feasibility, our research team, in partnership with the National Center for Health Statistics, has linked Florida cancer registry records with nationally representative National Health Interview Survey (NHIS) data with information on cancer histories. We now seek to perform a series of pilot analyses using this linked data demonstrating utility with the goal of building support for a national linkage consortium with US cancer registries.
|McClure, Laura A; Miller, Eric A; Tannenbaum, Stacey L et al. (2016) Linking the National Health Interview Survey with the Florida Cancer Data System: A Pilot Study. J Registry Manag 43:16-22|