published_or_final_version / abstract / Journalism and Media Studies Centre / Master / Master of Philosophy

Indiana University-Purdue University Indianapolis (IUPUI) / Introduction: Cancer registries collect tumor-related data to monitor incident rates and support population-based research. A common concern with using population-based registry data for research is reporting timeliness. Data timeliness have been recognized as an important data characteristic by both the Centers for Disease Control and Prevention (CDC) and the Institute of Medicine (IOM). Yet, few recent studies in the United States (U.S.) have systemically measured timeliness. The goal of this research is to evaluate the quality of cancer data and examine methods by which the reporting process can be improved. The study aims are: 1- evaluate the timeliness of cancer cases at the Indiana State Department of Health (ISDH) Cancer Registry, 2- identify the perceived barriers and facilitators to timely reporting, and 3- reengineer the current reporting process to improve turnaround time. Method: For Aim 1: Using the ISDH dataset from 2000 to 2009, we evaluated the reporting timeliness and subtask within the process cycle. For Aim 2: Certified cancer registrars reporting for ISDH were invited to a semi-structured interview. The interviews were recorded and qualitatively analyzed. For Aim 3: We designed a reengineered workflow to minimize the reporting timeliness and tested it using simulation. Result: The results show variation in the mean reporting time, which ranged from 426 days in 2003 to 252 days in 2009. The barriers identified were categorized into six themes and the most common barrier was accessing medical records at external facilities. We also found that cases reside for a few months in the local hospital database while waiting for treatment data to become available. The recommended workflow focused on leveraging a health information exchange for data access and adding a notification system to inform registrars when new treatments are available.