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Background: 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. Methods: 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. Results: 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. Conclusions: 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.
Pubmed ID: 32685696
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A long-term health research project which follows pregnant women and their offspring in a continuous health and developmental study. More than 14,000 mothers enrolled during pregnancy in 1991 and 1992, and the health and development of their children has been followed in great detail. The ALSPAC families have provided a vast amount of genetic and environmental information over the years which can be made available to researchers globally.
View all literature mentionsSoftware suite for qualitative data analysis for text-based data and higher-order forms of data. Various packages are available and are dependent on the system used and the type of data analysis needed.
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