Evaluating Difficult Decisions in Public Health Surveillance: Striking the Right Balance between Timeliness and XXXX .

@entity1939 @entity1 @entity600
INTRODUCTION: State-based surveillance programs play a key role in @entity600 planning, prevention, education, support, and research activities. High-quality data are essential to all of these functions, and a key indicator of quality is timeliness. The Florida Birth Defects Registry (FBDR)-one of the largest population-based state registries in the United States-faces challenges with timeliness, as evidenced by its 18-month lag time. The goal of this study was to determine if the timeliness of the FBDR could be improved without significantly reducing the @entity1939 of @entity600 ascertainment. METHODS: Using 2006-2011 data from the FBDR, we first investigated the timing of diagnosis of @entity600 by estimating the effect of different periods of follow-up on prevalence rates reported by the FBDR. We achieved this through retrospective reconstructions of the FBDR under 5 different scenarios with progressively narrower follow-up windows for each @entity1 , and by comparing recalculated rates to the rate of the current FBDR with 1 year of follow-up. We then considered scenarios in which the time lag used to construct the FBDR was reduced (15, 12, 9, and 6 months) by using less data (from 7 to 4 quarters). Recalculated rates were again compared to the current FBDR constructed with 2 years of data and an 18-month lag. Analyses were performed overall and for 44 specific defects. RESULTS: During the 6-year study period, the FBDR identified more than 27,000 @entity1 with a defect detected during the first year of life. Restricting follow-up from 1 year to 9 months would only result in a loss of 1.4% of cases. Cutting follow-up in half to 6 months would miss 3.2% of cases, although there was significant variation across defects. Improving timeliness had a small impact on @entity1939 of ascertainment. Overall, compiling the FBDR with only 6 quarters of Florida Agency for Health Care Administration data (as opposed to 8 quarters) would improve timeliness by approximately 6 months, resulting in a registry that is 99.4% complete. DISCUSSION: Six-to-nine month improvements in timeliness were achievable with a minimal sacrifice in @entity1939 (0.6%-1.7%). Efforts to enhance data quality through the assessment of timeliness and @entity1939 indicators are not unique to @entity600 surveillance programs. Other programs, particularly those with similar passive case ascertainment protocols, can use our findings to consider a more timely release of registry data, or to design similar investigations of their own.
