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.

Indiana University-Purdue University Indianapolis (IUPUI) / Consistent under-reporting of autism cases by Indiana physicians to the Indiana Birth Defects and Problems Registry (IBDPR) has made quality autism-related data very difficult to obtain (Indiana Birth Defects and Problems Registry [IBDPR], 2011). As a result, the Indiana State Department of Health (ISDH) currently also utilizes data from billing information that it receives from hospital discharges. However, such cases must be investigated further because autism is often merely suspected as a possibility in the discharge data. A chart auditor must therefore review the child’s chart to determine if the condition is confirmed. Meanwhile, the Indiana Department of Education (IDOE) has a different diagnostic procedure from physicians for determining whether a student has an Autism Spectrum Disorder (ASD), which qualifies him or her for special education. A physician diagnosis of autism does not guarantee that a child will receive special education from public schools. With all of these current complications surrounding autism, announced changes in the definition of autism by the American Psychiatric Association (APA) will likely have effects on both the special education field and the public health field. There is a possibility that children who had previously received special education could cease to maintain their eligibility and may find it difficult to obtain benefits. The IDOE may find it necessary to reevaluate their criteria for determining special education eligibility. Additionally, public health officials may see the definition changes affect the number of autism cases they perceive their populations to have, thus impacting community and policy decisions. This study was performed as an attempt to investigate and compare the sources used by the IBDPR to obtain autism data, and determine whether or not the resulting data creates an accurate depiction of the autistic population of Indiana. It was also performed to speculate whether a stricter definition of autism will result in a higher quality of data for the IBDPR and a more consistent view on the disorder between the ISDH and the IDOE. Perhaps from such consistency and simpler definitions, future recorded data will more closely resemble that of reality, enabling the ISDH to utilize the IBDPR to its full extent. Using current definitions for an exploratory analysis of data from the past five years, a discrepancy clearly exists between the IBDPR and the reality of the population of Indiana.