Lancaster Medical School, Lancaster University, Lancaster, United Kingdom.
Department of Behavioural Science and Health, University College London, London, United Kingdom.
JMIR Public Health Surveill. 2023 Mar 23;9:e40814. doi: 10.2196/40814.
BACKGROUND: Health research using commercial data is increasing. The evidence on public acceptability and sociodemographic characteristics of individuals willing to share commercial data for health research is scarce. OBJECTIVE: This survey study investigates the willingness to share commercial data for health research in the United Kingdom with 3 different organizations (government, private, and academic institutions), 5 different data types (internet, shopping, wearable devices, smartphones, and social media), and 10 different invitation methods to recruit participants for research studies with a focus on sociodemographic characteristics and psychological predictors. METHODS: We conducted a web-based survey using quota sampling based on age distribution in the United Kingdom in July 2020 (N=1534). Chi-squared tests tested differences by sociodemographic characteristics, and adjusted ordered logistic regressions tested associations with trust, perceived importance of privacy, worry about data misuse and perceived risks, and perceived benefits of data sharing. The results are shown as percentages, adjusted odds ratios, and 95% CIs. RESULTS: Overall, 61.1% (937/1534) of participants were willing to share their data with the government and 61% (936/1534) of participants were willing to share their data with academic research institutions compared with 43.1% (661/1534) who were willing to share their data with private organizations. The willingness to share varied between specific types of data-51.8% (794/1534) for loyalty cards, 35.2% (540/1534) for internet search history, 32% (491/1534) for smartphone data, 31.8% (488/1534) for wearable device data, and 30.4% (467/1534) for social media data. Increasing age was consistently and negatively associated with all the outcomes. Trust was positively associated with willingness to share commercial data, whereas worry about data misuse and the perceived importance of privacy were negatively associated with willingness to share commercial data. The perceived risk of sharing data was positively associated with willingness to share when the participants considered all the specific data types but not with the organizations. The participants favored postal research invitations over digital research invitations. CONCLUSIONS: This UK-based survey study shows that willingness to share commercial data for health research varies; however, researchers should focus on effectively communicating their data practices to minimize concerns about data misuse and improve public trust in data science. The results of this study can be further used as a guide to consider methods to improve recruitment strategies in health-related research and to improve response rates and participant retention.
背景:使用商业数据进行健康研究的情况越来越多。关于愿意为健康研究共享商业数据的个人的公众接受度和社会人口统计学特征的证据很少。
目的:本调查研究调查了英国个人对为健康研究共享商业数据的意愿,涉及 3 种不同组织(政府、私营和学术机构)、5 种不同数据类型(互联网、购物、可穿戴设备、智能手机和社交媒体)和 10 种不同的邀请方法,旨在招募参与研究的参与者,重点关注社会人口统计学特征和心理预测因素。
方法:我们于 2020 年 7 月使用基于英国年龄分布的配额抽样在网上进行了调查(N=1534)。卡方检验检验了社会人口统计学特征的差异,调整后的有序逻辑回归检验了与信任、对隐私重要性的感知、对数据滥用和感知风险的担忧以及数据共享的感知益处的关联。结果以百分比、调整后的优势比和 95%置信区间表示。
结果:总体而言,61.1%(937/1534)的参与者愿意与政府共享数据,61%(936/1534)的参与者愿意与学术研究机构共享数据,而 43.1%(661/1534)的参与者愿意与私营组织共享数据。不同类型的数据共享意愿不同-51.8%(794/1534)的参与者愿意共享会员卡数据,35.2%(540/1534)的参与者愿意共享互联网搜索历史记录,32%(491/1534)的参与者愿意共享智能手机数据,31.8%(488/1534)的参与者愿意共享可穿戴设备数据,30.4%(467/1534)的参与者愿意共享社交媒体数据。年龄越大,所有结果的相关性越差。信任与愿意共享商业数据呈正相关,而对数据滥用的担忧和对隐私的重要性感知则与愿意共享商业数据呈负相关。数据共享风险的感知与参与者考虑所有特定数据类型时的共享意愿呈正相关,但与组织无关。参与者更喜欢通过邮寄研究邀请,而不是数字研究邀请。
结论:这项基于英国的调查研究表明,愿意为健康研究共享商业数据的意愿存在差异;但是,研究人员应该专注于有效地传达他们的数据实践,以最大程度地减少对数据滥用的担忧,并提高公众对数据科学的信任。本研究的结果可进一步用于指导如何改进与健康相关的研究中的招募策略,并提高响应率和参与者保留率。
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