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Confidentiality Considerations for Use of Social-Spatial Data on the Social Determinants of Health: Sexual and Reproductive Health Case Study

机译:使用有关健康的社会决定因素的社会空间数据的保密注意事项:性健康和生殖健康案例研究

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摘要

Understanding whether and how the places where people live, work, and play are associated with health behaviors and health is essential to understanding the social determinants of health. However, social-spatial data which link a person and their attributes to a geographic location (e.g., home address) create potential confidentiality risks. Despite the growing body of literature describing approaches to protect individual confidentiality when utilizing social-spatial data, peer-reviewed manuscripts displaying identifiable individual point data or quasi-identifiers (attributes associated with the individual or disease that narrow identification) in maps persist, suggesting that knowledge has not been effectively translated into public health research practices. Using sexual and reproductive health as a case study, we explore the extent to which maps appearing in recent peer-reviewed publications risk participant confidentiality. Our scoping review of sexual and reproductive health literature published and indexed in PubMed between January 1, 2013 and September 1, 2015 identified 45 manuscripts displaying participant data in maps as points or small-population geographic units, spanning 26 journals and representing studies conducted in 20 countries. Notably, 56% (13/23) of publications presenting point data on maps either did not describe approaches used to mask data or masked data inadequately. Furthermore, 18% (4/22) of publications displaying data using small-population geographic units included at least two quasi-identifiers. These findings highlight the need for heightened education for researchers, reviewers, and editorial teams. We aim to provide readers with a primer on key confidentiality considerations when utilizing linked social-spatial data for visualizing results. Given the widespread availability of place-based data and the ease of creating maps, it is critically important to raise awareness on when social-spatial data constitute protected health information, best practices for masking geographic identifiers, and methods of balancing disclosure risk and scientific utility. We conclude with recommendations to support the preservation of confidentiality when disseminating results.
机译:了解人们的生活,工作和娱乐场所是否以及如何与健康行为和健康相关联,这对于理解健康的社会决定因素至关重要。但是,将人及其属性链接到地理位置(例如家庭住址)的社交空间数据会带来潜在的机密性风险。尽管有越来越多的文献描述了在利用社会空间数据时保护个人机密性的方法,但是经过同行评审的手稿在地图上仍然显示出可识别的个人点数据或准标识符(与个体或疾病相关的属性或狭窄的识别信息),这表明知识尚未有效地转化为公共卫生研究实践。以性健康和生殖健康为例,我们探讨了最近在同行评审的出版物中出现的地图对参与者保密的风险。我们对2013年1月1日至2015年9月1日在PubMed上发表并编入索引的性健康和生殖健康文献进行了范围界定的审查,确定了45份手稿,这些地图以点或人口稀少的地理单位在地图上显示参与者数据,涵盖了26种期刊,并代表了20项研究国家。值得注意的是,在地图上显示点数据的出版物中有56%(13/23)没有描述用于掩盖数据或掩盖数据的方法不足。此外,使用小规模地理单位显示数据的出版物中有18%(4/22)至少包含两个准标识符。这些发现凸显了对研究人员,审稿人和编辑团队进行加强教育的必要性。我们旨在为读者提供利用链接的社会空间数据可视化结果时有关关键机密性注意事项的入门知识。鉴于基于位置的数据的广泛可用性和创建地图的简便性,至关重要的是提高对以下方面的认识:社会空间数据何时构成受保护的健康信息,掩盖地理标识符的最佳做法以及平衡披露风险与科学实用性的方法。最后,我们提出了一些建议,以支持在传播结果时保护机密性。

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