Background: US public health authorities use syndromic surveillance to monitor and detect public health threats, conditions, and trends in near real-time. Nearly all US jurisdictions that conduct syndromic surveillance send their data to the National Syndromic Surveillance Program (NSSP), operated by the US. Centers for Disease Control and Prevention. However, current data sharing agreements limit federal access to state and local NSSP data to only multi-state regional aggregations. This limitation was a significant challenge for the national response to COVID-19. This study seeks to understand state and local epidemiologists' views on increased federal access to state NSSP data and identify policy opportunities for public health data modernization.
Methods: In September 2021, we used a virtual, modified nominal group technique with twenty regionally diverse epidemiologists in leadership positions and three individuals representing national public health organizations. Participants individually generated ideas on benefits, concerns, and policy opportunities relating to increased federal access to state and local NSSP data. In small groups, participants clarified and grouped the ideas into broader themes with the assistance of the research team. An web-based survey was used to evaluate and rank the themes using five-point Likert importance questions, top-3 ranking questions, and open-ended response questions.
Results: Participants identified five benefit themes for increased federal access to jurisdictional NSSP data, with the most important being improved cross-jurisdiction collaboration (mean Likert = 4.53) and surveillance practice (4.07). Participants identified nine concern themes, with the most important concerns being federal actors using jurisdictional data without notice (4.60) and misinterpretation of data (4.53). Participants identified eleven policy opportunities, with the most important being involving state and local partners in analysis (4.93) and developing communication protocols (4.53).
Conclusion: These findings identify barriers and opportunities to federal-state-local collaboration critical to current data modernization efforts. Syndromic surveillance considerations warrant data-sharing caution. However, identified policy opportunities share congruence with existing legal agreements, suggesting that syndromic partners are closer to agreement than they might realize. Moreover, several policy opportunities (i.e., including state and local partners in data analysis and developing communication protocols) received consensus support and provide a promising path forward.
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http://dx.doi.org/10.1186/s12889-023-15161-5 | DOI Listing |
J Neuroinflammation
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Department of Molecular and Integrative Physiology, University of Michigan Medical School, Ann Arbor, MI, USA.
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January 2025
Department of Medicine III and Karl Landsteiner Institute for Metabolic Diseases and Nephrology, Klinik Hietzing, Vienna, Austria.
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Sci Rep
January 2025
Center for Medical Genetics, Hunan Key Laboratory of Medical Genetics, MOE Key Lab of Rare Pediatric Diseases, School of Life Sciences, Central South University, Changsha, 410000, Hunan, China.
Autosomal dominant deafness-15 which is caused by mutation in the POU4F3 gene, has been reported with a wide degree of clinical heterogeneity, even between intrafamilial members. However, the reason is still elusive. In this study, A four-generation Chinese family with 11 patients manifesting late-onset progressive non-syndromic hearing loss was recruited.
View Article and Find Full Text PDFEMBO J
January 2025
Howard Hughes Medical Institute, Basic Sciences Division, Fred Hutchinson Cancer Center, Seattle, WA, 98109, USA.
Chromosome segregation relies on kinetochores that assemble on specialized centromeric chromatin containing a histone H3 variant. In budding yeast, a single centromeric nucleosome containing Cse4 assembles at a sequence-defined 125 bp centromere. Yeast centromeric sequences are poor templates for nucleosome formation in vitro, suggesting the existence of mechanisms that specifically stabilize Cse4 nucleosomes in vivo.
View Article and Find Full Text PDFCell Death Dis
January 2025
School of Pharmacy, Faculty of Medicine & State Key Laboratory of Quality Research in Chinese Medicine, Macau University of Science and Technology, Macau, China.
Small extracellular vesicles (sEVs), carrying PD-L1, have been implicated in immune evasion and tumor progression. However, understanding how PD-L1 sEVs are secreted still needs to be improved. We found that the secretion dynamics of PD-L1 sEVs is similar to that of other sEVs.
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