Garett Renee, Young Sean D
ElevateU, Irvine, CA, United States.
Department of Emergency Medicine, University of California, Irvine, Irvine, CA, United States.
Front Big Data. 2022 Apr 25;5:871236. doi: 10.3389/fdata.2022.871236. eCollection 2022.
Digital data, including social media, wearable device data, electronic health records, and internet search data, are increasingly being integrated into public health research and policy. Because of the current issues around public distrust of science and other ethical issues in public health research, it is essential that researchers conduct ongoing studies assessing people's perceptions around and willingness to share digital data. This study aims to examine participants' social media use and comfort sharing their data with health researchers. One hundred and sixty-one participants with medical conditions were recruited through social media paid advertisements and referral from a website, and invited to complete surveys on social media use and ethical perspectives on data sharing. Eligibility criteria were adults 18 years old or older, living in the US, self-reported having been diagnosed by a physician with a medical condition, belonging to at least one social media platform, using social media at least twice a week, and owning a smartphone. Study participants were mostly female, White, and with a mean age of 36.31 years. More than one third of participants reported being very comfortable sharing electronic health data and social media data for personalized healthcare and to help others. Findings suggest that participants are very uncomfortable sharing their location and text message data with researchers, with primary concerns centered around loss of privacy, disclosing private information, and that friends, family, and others may find out that they shared text messages with researchers. We discuss the implications of this research before and after the COVID-19 pandemic, along with its potential implications for future collection of digital data for public health.
数字数据，包括社交媒体数据、可穿戴设备数据、电子健康记录和互联网搜索数据，正越来越多地被整合到公共卫生研究和政策中。由于当前公众对科学的不信任以及公共卫生研究中的其他伦理问题，研究人员持续开展评估人们对数字数据的看法和分享意愿的研究至关重要。本研究旨在调查参与者的社交媒体使用情况以及他们与健康研究人员分享数据时的舒适度。通过社交媒体付费广告和网站推荐招募了161名患有疾病的参与者，并邀请他们完成关于社交媒体使用和数据分享伦理观点的调查。入选标准为年龄在18岁及以上的成年人，居住在美国，自我报告被医生诊断患有疾病，属于至少一个社交媒体平台，每周至少使用社交媒体两次，且拥有智能手机。研究参与者大多为女性、白人，平均年龄为36.31岁。超过三分之一的参与者表示非常愿意为个性化医疗和帮助他人分享电子健康数据和社交媒体数据。研究结果表明，参与者非常不愿意与研究人员分享他们的位置和短信数据，主要担忧集中在隐私丧失、披露私人信息以及朋友、家人和其他人可能会发现他们与研究人员分享了短信。我们讨论了这项研究在新冠疫情前后的影响，以及它对未来公共卫生数字数据收集的潜在影响。
