案例研究:开发资源,促进关于使用链接的基于地址的数据用于研究的公共对话
Nicola Firman1, Carol Dezateux1, Claire Newman2
1Wolfson Institute of Population Health, Faculty of Medicine and Dentistry, Queen Mary University of London, Yvonne Carter Building, 58 Turner Street, London, E1 2AB.
International journal of population data science
|February 11, 2026
概括
这项研究开发了一个工具包,以建立公众对使用与地址相关的患者数据进行研究的信任. 这些资源促进了关于独特财产参考号码 (UPRNs) 和家庭级数据链接的对话.
科学领域:
- 医疗保健服务研究 医疗服务研究
- 数据科学数据科学数据科学
- 公共卫生 公共卫生
背景情况:
- 唯一属性参考号码 (UPRNs) 是英国的强制性标识符,适用于用于研究的匿名数据链接.
- 建立了公众对使用患者数据进行研究的信任,但不是专门用于使用UPRN的基于地址的链接.
研究的目的:
- 建立公众对家庭级别基于地址的数据链接的信任.
- 开发和测试通信材料,以便公众就UPRN数据使用进行审议.
主要方法:
- 与公众咨询小组合作开发一个原型网站和资源.
- 通过与各种社区居民的研讨会,测试信息材料和交互工具.
- 基于参与者对可访问性和参与度的反,对资源的代改进.
主要成果:
- 对话强调了需要使用易于理解的语言,更少的文本繁重格式和交互式工具.
- 视觉材料必须反映出不同的人口统计数据,以实现相关性.
- 适应信息传递格式 (数字/物理) 对于参与至关重要.
结论:
- 一个经过测试的工具包现在支持使用与地址相关的患者数据进行关于研究的对话.
- 该工具包被传播,并免费提供给研究界.
- 这项工作解决了了解公众对基于UPRN的数据链接的态度的差距.
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