Demographic differences in willingness to share electronic health records in the All of Us Research Program.
Demographic differences in willingness to share electronic health records in the All of Us Research Program.
复制标题
在“我们所有人研究计划”中共享电子健康记录的意愿存在人口差异。
DOI：
10.1093/jamia/ocac055
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发表时间：
2022
期刊：
影响因子：
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通讯作者：
Peltz-Rauchman,CathrynD
中科院分区：
文献类型：
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作者：
Joseph,ChristineLM;Tang,Amy;Chesla,DavidW;Epstein,MaraM;Pawloski,PamalaA;Stevens,AlanB;Waring,StephenC;Ahmedani,BrianK;Johnson,ChristineC;Peltz-Rauchman,CathrynD
参与者愿意分享电子健康记录（EHR）信息是美国国立卫生研究院全民研究计划（AoURP）成功的关键。我们描述的人口统计学特征的参与者拒绝访问他们的EHR data.Materials和MethodsWe包括参与者注册AoURP之间的2017年6月6日和2019年12月31日通过泛美联盟的医疗保健系统研究网络（TACH）。TACH是一个联盟的医疗保健系统跨越6个州，和AoURP的研究partner.ResultsWe分析数据为25 852名参与者（89.3%的人报名参加）。 平均年龄= 52.0岁（SD 16.8），66.5%为白色，18.7%为黑人/非裔美国人，7.7%为西班牙裔，32.5%为女性，76%为高中以上学历。总体而言，2.3%的参与者拒绝分享他们的EHR数据（TACH网站的范围= 1.3%至3.5%）。年龄较小、女性和教育程度>高中与EHR数据共享率下降显著相关，比值比（95%置信区间）分别为1.26（1.19-1.33）、1.74（1.42-2.14）和2.44（1.86-3.21）。结果是相似的，当几个敏感性分析进行。DiscussionAoURP寻求一个数据集，反映我们国家的多样性在各个方面的参与。那些在生物医学研究代表不足可能不愿意分享访问他们的EHR data.ConclusionIn我们的数据，种族和民族没有独立相关的参与者决定拒绝访问他们的EHR信息。结果表明，AoURP数据集的价值不太可能受到该亚组的规模或种族/民族组成的限制。
ObjectiveParticipant willingness to share electronic health record (EHR) information is central to success of the National Institutes of Health All of Us Research Program (AoURP). We describe the demographic characteristics of participants who decline access to their EHR data.Materials and MethodsWe included participants enrolling in AoURP between June 6, 2017 and December 31, 2019 through the Trans-American Consortium for the Health Care Systems Research Network (TACH). TACH is a consortium of health care systems spanning 6 states, and an AoURP research partner.ResultsWe analyzed data for 25 852 participants (89.3% of those enrolled). Mean age = 52.0 years (SD 16.8), with 66.5% White, 18.7% Black/African American, 7.7% Hispanic, 32.5% female, and 76% with >a high school diploma. Overall, 2.3% of participants declined to share access to their EHR data (range across TACH sites = 1.3% to 3.5%). Younger age, female sex, and education >high school were significantly associated with decline to share EHR data, odds ratio (95% confidence interval) = 1.26 (1.19–1.33), 1.74 (1.42–2.14), and 2.44 (1.86–3.21), respectively. Results were similar when several sensitivity analyses were performed.DiscussionAoURP seeks a dataset reflecting our nation’s diversity in all aspects of participation. Those under-represented in biomedical research may be reluctant to share access to their EHR data.ConclusionIn our data, race and ethnicity were not independently related to participant decision to decline access to their EHR information. Results suggest that the value of the AoURP dataset is unlikely to be constrained by the size or the racial/ethnic composition of this subgroup.