TY -的盟Hentschel奥斯汀盟——萧,楚J盟——陈,林恩Y AU -赖特,劳伦AU -肖,Jennifer AU - Du Xinsong盟——Flood-Grady伊丽莎白AU -麻的纤维,克里斯托弗AU -里德,卡莉F AU -弗朗索瓦,玛格达盟——Louis-Jacques Adetola AU - Shenkman,伊丽莎白盟——Krieger Janice L AU -眼肌,多明尼克J PY - 2021 DA - 2021/3/5 TI -视角的孕妇和哺乳期妇女参与纵向母婴研究涉及电子健康记录:质性研究JO - JMIR儿科父母SP - e23842 VL - 4 IS - 1kw -电子健康记录KW -怀孕KW -哺乳KW -母婴健康KW -研究参与KW -母婴病历联动AB -背景:电子健康记录(EHRs)在纵向母婴研究中具有巨大潜力，从评估研究可行性到促进患者招募到简化研究访问和数据收集。现有关于孕妇和哺乳妇女使用电子病历的观点的研究仅限于使用电子病历从事保健，而不是参与研究。目的:本研究的目的是探讨孕妇和哺乳妇女对公布自己和婴儿的EHR数据进行纵向研究的观点，以确定影响她们参与研究意愿的因素。方法:我们对佛罗里达州阿拉楚瓦县的孕妇或哺乳妇女进行了半结构化访谈。参与者被问及对EHR和EHR患者门户的熟悉程度，向研究人员发布母婴EHR数据的舒适度，数据发布的时间长度，以及个人研究测试结果是否应包括在EHR中。采访被逐字记录下来。转录本使用NVivo 12软件(QSR International)进行组织和编码，编码数据采用持续比较的方法进行主题分析。结果:参与者包括29名年龄在22至39岁之间的孕妇或哺乳妇女。超过一半的样本至少拥有大专以上学历。 Nearly all participants (27/29, 93%) were familiar with EHRs and had experience accessing an EHR patient portal. Less than half of the participants (12/29, 41%) were willing to make EHR data available to researchers for the duration of a study or longer. Participants’ concerns about sharing EHRs for research purposes emerged in 3 thematic domains: privacy and confidentiality, transparency by the research team, and surrogate decision-making on behalf of infants. The potential release of sensitive or stigmatizing information, such as mental or sexual health history, was considered in the decisions to release EHRs. Some participants viewed the simultaneous use of their EHRs for both health care and research as potentially beneficial, whereas others expressed concerns about mixing their health care with research. Conclusions: This exploratory study indicates that pregnant and breastfeeding women may be willing to release EHR data to researchers if researchers adequately address their concerns regarding the study design, communication, and data management. Pregnant and breastfeeding women should be included in EHR-based research as long as researchers are prepared to address their concerns. SN - 2561-6722 UR - https://pediatrics.www.mybigtv.com/2021/1/e23842 UR - https://doi.org/10.2196/23842 UR - http://www.ncbi.nlm.nih.gov/pubmed/33666558 DO - 10.2196/23842 ID - info:doi/10.2196/23842 ER -