Attitudes towards transactional data donation and linkage in a longitudinal population study: evidence from the Avon Longitudinal Study of Parents and Children [version 2; peer review: 2 approved]

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 t...

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Main Authors: Anya Skatova, Kate Shiells, Andy Boyd
Format: Article
Language:English
Published: Wellcome 2021-06-01
Series:Wellcome Open Research
Online Access:https://wellcomeopenresearch.org/articles/4-192/v2
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spelling doaj-5d7b3be2bd5747f199546aa961a9f9a32021-06-14T14:57:33ZengWellcomeWellcome Open Research2398-502X2021-06-01410.12688/wellcomeopenres.15557.218120Attitudes towards transactional data donation and linkage in a longitudinal population study: evidence from the Avon Longitudinal Study of Parents and Children [version 2; peer review: 2 approved]Anya Skatova0Kate Shiells1Andy Boyd2School of Psychological Science, University of Bristol, Bristol, BS8 1TU, UKSchool of Psychological Science, University of Bristol, Bristol, BS8 1TU, UKBristol Medical School, Population Health Sciences, University of Bristol, Bristol, BS8 2BN, UKBackground: 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.https://wellcomeopenresearch.org/articles/4-192/v2
collection DOAJ
language English
format Article
sources DOAJ
author Anya Skatova
Kate Shiells
Andy Boyd
spellingShingle Anya Skatova
Kate Shiells
Andy Boyd
Attitudes towards transactional data donation and linkage in a longitudinal population study: evidence from the Avon Longitudinal Study of Parents and Children [version 2; peer review: 2 approved]
Wellcome Open Research
author_facet Anya Skatova
Kate Shiells
Andy Boyd
author_sort Anya Skatova
title Attitudes towards transactional data donation and linkage in a longitudinal population study: evidence from the Avon Longitudinal Study of Parents and Children [version 2; peer review: 2 approved]
title_short Attitudes towards transactional data donation and linkage in a longitudinal population study: evidence from the Avon Longitudinal Study of Parents and Children [version 2; peer review: 2 approved]
title_full Attitudes towards transactional data donation and linkage in a longitudinal population study: evidence from the Avon Longitudinal Study of Parents and Children [version 2; peer review: 2 approved]
title_fullStr Attitudes towards transactional data donation and linkage in a longitudinal population study: evidence from the Avon Longitudinal Study of Parents and Children [version 2; peer review: 2 approved]
title_full_unstemmed Attitudes towards transactional data donation and linkage in a longitudinal population study: evidence from the Avon Longitudinal Study of Parents and Children [version 2; peer review: 2 approved]
title_sort attitudes towards transactional data donation and linkage in a longitudinal population study: evidence from the avon longitudinal study of parents and children [version 2; peer review: 2 approved]
publisher Wellcome
series Wellcome Open Research
issn 2398-502X
publishDate 2021-06-01
description 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.
url https://wellcomeopenresearch.org/articles/4-192/v2
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