基于国家和领土的差异阻碍了建立协调的国家注册表的建立
Larissa K Lloyd1, Calum Nicholson1, Geoff Strange1
1Clinical Research Group, Heart Research Institute, Sydney, NSW 2042, Australia; and Cardiology Department, Royal Prince Alfred Hospital, Level 6, Building 75, Missenden Road, Camperdown, Sydney, NSW 2050, Australia; and Faculty of Medicine, The University of Sydney, Sydney, NSW 2050, Australia.
概括
立法和行政障碍阻碍了澳大利亚国家先天性心脏病 (CHD) 登记处的医院参与和数据链接. 协调国家法律和行政对于建立统一的国家注册表至关重要.
科学领域:
- 医疗保健服务研究 医疗服务研究
- 公共卫生政策 公共卫生政策
- 医疗信息学 医疗信息学
背景情况:
- 建立先天性心脏病 (CHD) 的国家注册表对于改善患者的治疗结果和研究至关重要.
- 之前的努力在澳大利亚各州收集和整合数据方面遇到了挑战.
研究的目的:
- 确定和描述医院参与澳大利亚国家先天性心脏病 (CHD) 注册的立法和行政障碍.
- 分析建立国家数据链接所面临的挑战.
主要方法:
- 采用了一个叙事审查方法.
- 该审查是基于澳大利亚国家CHD登记处在建立参与医院站点和国家数据链接方面的经验.
- 数据收集涉及分析管辖区差异和识别障碍.
主要成果:
- 在不同的澳大利亚司法管辖区中发现了许多立法和行政障碍.
- 一些障碍是可以通过额外的资源和时间来克服的,而另一些则带来了重大挑战.
- 报告指出,各州存在重大立法和行政差异,阻碍了国家协调.
结论:
- 迫切需要更好地协调治理健康研究的州立立法.
- 协调行政流程对于减少重复和简化数据链接至关重要.
- 目前各州的立法和行政差异严重阻碍了真正的国家CHD注册表的发展.
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