Health Informatics: How information technology can increase access and use of registry data

Background: Central Cancer Registries (CCRs) hold a vast amount of data that is available upon request to serve public health surveillance and research needs. The data request process varies from state to state, does not follow a standard, and is still a paper-based process in many states. Each CCR follows state- or registry-specific guidelines. Streamlining and standardizing the data request process would make data more accessible and more readily available for surveillance and research. Purpose: Develop a streamlined and standardized electronic data request process and tool for research request tracking. Methods: We examined existing processes and procedures for research data requests and compared the practice of several different approaches to determine the minimum standard information that is necessary for the data requests and how to store, track and present that information at the disease registry. In early 2011, we developed and disseminated questionnaires to CCRs and researchers to determine needs and use. Results: As a result, we developed an electronic tool for research requests to make the process more efficient and transparent for CCRs and researchers. CCR staff can search on a wide variety of variables, e.g., date of request, requestor characteristics, cancer site/ histology, time period and geographic area of interest, date request completed. Conclusion: The research data request process in an electronic form is beneficial for both the requestor and the registry by making the process efficient and streamlined to serve surveillance and research needs. The tool can also be used by administrative, fiscal and research staff to document data use and activities.