Quality/Quantity Assessment of Patient Registries versus Questionnaire Self-Reports
Jones, S. M., McMichael, J. P., Treiman, K., & Hobbs, C. L. (2012, July). Quality/Quantity Assessment of Patient Registries versus Questionnaire Self-Reports. Presented at JSM 2012, San Diego, CA.
The growing availability of patient registries present a number of sampling issues and methodological challenges in survey research. For example, researchers must follow the guidelines specified in the 1996 HIPAA (Health Insurance Portability and Accountability Act) Privacy Rule because registries are administrative records that often contain personal identifying information and personal health information. Even with proper data abstraction procedures, the quality of patient data can create concerns. This is especially true when the administrative data are incomplete or in error, which may contradict the patient's questionnaire self-reports. On the other hand, the administrative data may be correct but the patient responded in error. This paper discusses the extent of agreement/disagreement of the registry data compared to patient questionnaire self-reports using experience from the National Cancer Institute Community Cancer Centers Program pilot study. Presented are results from comparisons of race/ethnicity, cancer type/location, and cancer treatment type.