Skatova Anya, Shiells Kate, Boyd Andy
School of Psychological Science, University of Bristol, Bristol, BS8 1TU, UK.
The Alan Turing Institute, London, NW1 2TB, UK.
Wellcome Open Res. 2021 Jun 9;4:192. doi: 10.12688/wellcomeopenres.15557.2. eCollection 2019.
Commercial transaction records, such as data collected through banking and retail loyalty cards, present a novel opportunity for longitudinal population studies to capture data on participants' real-world behaviours and interactions. However, little is known about participant attitudes towards donating transactional records for this purpose. This study aimed to: (i) explore the attitudes of longitudinal population study participants towards sharing their transactional records for health research and data linkage; and (ii) explore the safeguards that researchers should consider implementing when looking to request transactional data from participants for data linkage studies. Participants in the Avon Longitudinal Study of Parents and Children were invited to a series of three focus groups with semi-structured discussions designed to elicit opinions. Through asking participants to attend three focus groups we aimed to facilitate more in-depth discussions around the potentially complex topic of data donation and linkage. Thematic analysis was used to sort data into overarching themes addressing the research questions. Participants (n= 20) expressed a variety of attitudes towards data linkage, which were associated with safeguards to address concerns. This data was sorted into three themes: understanding, trust, and control. We discuss the importance of explaining the purpose of data linkage, consent options, who the data is linked with and sensitivities associated with different parts of transactional data. We describe options for providing further information and controls that participants consider should be available when studies request access to transactional records. This study provides initial evidence on the attitudes and concerns of participants of a longitudinal cohort study towards transactional record linkage. The findings suggest a number of safeguards which researchers should consider when looking to recruit participants for similar studies, such as the importance of ensuring participants have access to appropriate information, control over their data, and trust in the organisation.
商业交易记录，比如通过银行和零售忠诚卡收集的数据，为纵向人群研究提供了一个新机会，用以获取参与者真实世界行为和互动的数据。然而，对于参与者为此目的捐赠交易记录的态度却知之甚少。本研究旨在：（i）探究纵向人群研究参与者对于为健康研究和数据关联而分享其交易记录的态度；以及（ii）探究研究人员在寻求向参与者索要交易数据用于数据关联研究时应考虑实施的保障措施。雅芳亲子纵向研究的参与者被邀请参加一系列三个焦点小组，小组讨论采用半结构化设计以引出观点。通过要求参与者参加三个焦点小组，我们旨在促进围绕数据捐赠和关联这一潜在复杂主题展开更深入的讨论。采用主题分析法将数据整理成涵盖研究问题的总体主题。参与者（n = 20）对数据关联表达了各种态度，这些态度与解决担忧的保障措施相关。这些数据被整理成三个主题：理解、信任和控制。我们讨论了解释数据关联目的、同意选项、数据与谁关联以及交易数据不同部分相关敏感性的重要性。我们描述了在研究请求获取交易记录时，为参与者提供进一步信息和控制的选项，参与者认为这些选项应该是可行的。本研究提供了关于纵向队列研究参与者对交易记录关联的态度和担忧的初步证据。研究结果表明，研究人员在为类似研究招募参与者时应考虑一些保障措施，比如确保参与者能够获取适当信息、对其数据的控制权以及对组织的信任的重要性。
