Currently submitted to: Journal of Medical Internet Research
Date Submitted: Sep 18, 2020
Open Peer Review Period: Sep 11, 2020 - Nov 6, 2020
(currently open for review)
Understanding barriers to linking novel consumer and lifestyle data for health research, results from the LifeInfo Survey: a topic modelling approach
Novel consumer and lifestyle data, for example those collected by supermarket loyalty cards or mobile phone exercise tracking apps, offer numerous benefits for researchers wishing to understand diet and exercise related risk factors for diseases. Yet, limited research has addressed public attitudes towards linking these data with individual health records for research purposes.
The aim of this research was to identify key barriers for data linkage and recommend safeguards and procedures that would encourage individuals to share these data for potential future research.
The LifeInfo Survey consulted the public on their attitudes towards sharing consumer and lifestyle data for research purposes. Where barriers to data sharing existed, participants provided unstructured survey responses detailing what would make them more likely to share data for linkage with their health record in the future. The topic modelling technique Latent Dirichlet Allocation (LDA) was used to analyse these textual responses to uncover common thematic topics within the texts.
Participants provided responses related to sharing their store loyalty card data (n = 2,338) and health/fitness app data (n = 1,531). Key barriers to data sharing identified through topic modelling included: data safety and security, personal privacy, requirements of further information, fear of data being accessed by others, problems with data accuracy, not understanding the reason for data linkage and not using data production services. We provide recommendations for addressing these issues to establish best practice for future researchers wishing to utilise these data.
This study formulates large-scale consultation of public attitudes towards data linkage of this kind, as such, it is an important first step in understanding and addressing barriers to participation for research utilising novel consumer and lifestyle data.
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