Bouras Adam, Simoes Eduardo J, Boren Suzanne, Hicks Lanis, Zachary Iris, Buck Christoph, Dhingra Satvinder, Ellis Richard
Department of Health Management and Informatics, University of Missouri-Columbia, Columbia, MO, United States.
Missouri University Institute for Data Science and Informatics, University of Missouri-Columbia, Columbia, MO, United States.
J Particip Med. 2020 May 15;12(2):e14062. doi: 10.2196/14062.
Advances in information communication technology provide researchers with the opportunity to access and collect continuous and granular data from enrolled participants. However, recruiting study participants who are willing to disclose their health data has been challenging for researchers. These challenges can be related to socioeconomic status, the source of data, and privacy concerns about sharing health information, which affect data-sharing behaviors.
This study aimed to assess healthy non-Hispanic white mothers' attitudes in five areas: motivation to share data, concern with data use, desire to keep health information anonymous, use of patient portal and willingness to share anonymous data with researchers.
This cross-sectional study was conducted on 622 healthy non-Hispanic white mothers raising healthy children. From a Web-based survey with 51 questions, we selected 15 questions for further analysis. These questions focused on attitudes and beliefs toward data sharing, internet use, interest in future research, and sociodemographic and health questions about mothers and their children. Data analysis was performed using multivariate logistic regressions to investigate the factors that influence mothers' willingness to share their personal health data, their utilization of a patient portal, and their interests in keeping their health information anonymous.
The results of the study showed that the majority of mothers surveyed wanted to keep their data anonymous (440/622, 70.7%) and use patient portals (394/622, 63.3%) and were willing to share their data from Web-based surveys (509/622, 81.8%) and from mobile phones (423/622, 68.0%). However, 36.0% (224/622) and 40.5% (252/622) of mothers were less willing to share their medical record data and their locations with researchers, respectively. We found that the utilization of patient portals, their attitude toward keeping data anonymous, and their willingness to share different data sources were dependent on the mothers' health care provider status, their motivation, and their privacy concerns. Mothers' concerns about the misuse of personal health information had a negative impact on their willingness to share sensitive data (ie, electronic medical record: adjusted odds ratio [aOR] 0.43, 95% CI 0.25-0.73; GPS: aOR 0.4, 95% CI 0.27-0.60). In contrast, mothers' motivation to share their data had a positive impact on disclosing their data via Web-based surveys (aOR 5.94, 95% CI 3.15-11.2), apps and devices designed for health (aOR 5.3, 95% CI 2.32-12.1), and a patient portal (aOR 4.3, 95% CI 2.06-8.99).
The findings of this study suggest that mothers' privacy concerns affect their decisions to share sensitive data. However, mothers' access to the internet and the utilization of patient portals did not have a significant effect on their willingness to disclose their medical record data. Finally, researchers can use our findings to better address their study subjects concerns and gain their subjects trust to disclose data.
信息通信技术的进步为研究人员提供了从已招募参与者那里获取并收集连续且细致数据的机会。然而，招募愿意披露其健康数据的研究参与者对研究人员来说一直是一项挑战。这些挑战可能与社会经济地位、数据来源以及对共享健康信息的隐私担忧有关，这些因素会影响数据共享行为。
本研究旨在评估健康的非西班牙裔白人母亲在五个方面的态度：分享数据的动机、对数据使用的担忧、对保持健康信息匿名的渴望、患者门户网站的使用情况以及与研究人员共享匿名数据的意愿。
这项横断面研究是针对622名养育健康子女的健康非西班牙裔白人母亲开展的。从一个包含51个问题的网络调查问卷中，我们选取了15个问题进行进一步分析。这些问题聚焦于对数据共享的态度和信念、互联网使用情况、对未来研究的兴趣以及关于母亲及其子女的社会人口统计学和健康问题。使用多变量逻辑回归进行数据分析，以调查影响母亲分享其个人健康数据的意愿、患者门户网站的使用情况以及对保持其健康信息匿名的兴趣的因素。
研究结果表明，大多数接受调查的母亲希望对其数据进行匿名处理（440/622，70.7%）并使用患者门户网站（394/622，63.3%），并且愿意分享她们通过网络调查问卷（509/622，81.8%）和手机（423/622，68.0%）收集到的数据。然而，分别有36.0%（224/622）和4
