Abstract
BackgroundNovel consumer and lifestyle data, such as those collected by supermarket loyalty cards or mobile phone exercise tracking apps, offer numerous benefits for researchers seeking to understand diet- and exercise-related risk factors for diseases. However, limited research has addressed public attitudes toward linking these data with individual health records for research purposes. Data linkage, combining data from multiple sources, provides the opportunity to enhance preexisting data sets to gain new insights.ObjectiveThe aim of this study is to identify key barriers to data linkage and recommend safeguards and procedures that would encourage individuals to share such data for potential future research.MethodsThe LifeInfo Survey consulted the public on their attitudes toward 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 records in the future. The topic modeling technique latent Dirichlet allocation was used to analyze these textual responses to uncover common thematic topics within the texts.ResultsParticipants provided responses related to sharing their store loyalty card data (n=2338) and health and fitness app data (n=1531). Key barriers to data sharing identified through topic modeling 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 services that produce these data. We provide recommendations for addressing these issues to establish the best practice for future researchers interested in using these data.ConclusionsThis study formulates a large-scale consultation of public attitudes toward this kind of data linkage, which is an important first step in understanding and addressing barriers to participation in research using novel consumer and lifestyle data.
Highlights
BackgroundPoor diet and physical inactivity are known to contribute to millions of early deaths worldwide [1,2]
Big and novel lifestyle data, produced when using services such as supermarket loyalty cards or health and fitness monitoring apps, have many benefits compared with more traditional forms of data collected through surveys, interviews, and food or exercise logs; as these data are collected during everyday activities, they are naturalistic and nonintrusive [9], meaning they do not encounter the selective reporting bias entailed with traditional methods [7]
Despite the obvious opportunities provided by the proliferation of big data for health research, little is known about public attitudes toward the linkage of lifestyle data with individual health records for research
Summary
BackgroundPoor diet and physical inactivity are known to contribute to millions of early deaths worldwide [1,2]. Large volumes of data can potentially be shared with researchers almost in real time, surpassing the scale of traditional methods at a very low cost and requiring little or no effort on the part of the participant [10]. These data are uniquely set up for at-scale longitudinal studies with the additional benefit of extending research into traditionally hard-to-reach populations [10]. Conclusions: This study formulates a large-scale consultation of public attitudes toward this kind of data linkage, which is an important first step in understanding and addressing barriers to participation in research using novel consumer and lifestyle data
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