Background HDR UK Scotland has proposed to set up an electronic data resource, the ’Scottish birth e-cohort’, which links existing survey and healthcare datasets for everyone born in Scotland since 1975. Adding PROMs and health data from smart devices to this resource would provide a holistic picture of population health. We conducted a qualitative study to investigate the general public’s willingness to share PROMs and health data from smart devices with researchers and what facilitators and barriers exist for doing so.
Methods We carried out a literature review on existing knowledge and developed a schedule for semi-structured interviews. Eighteen respondents were recruited through the Scottish Health Research Register; the purpose was to recruit a representative sample of the Scottish birth e-cohort by age, gender and the Scottish Index of Multiple deprivation. We applied framework analysis to allow for inductive coding of open-ended accounts and deductive coding of pre-defined themes using NVivo 12 Pro software and manual coding.
Results We developed nine themes that summarise facilitators and barriers of data sharing. 1) ’Researchers are trusted partners’ refers to the prevailing views that research is beneficial for everyone; people trust universities’ research governance and are therefore willing to share their data. 2) Trust is conditional on data security and research transparency. Clear communication about research processes and data security facilitates the willingness to share the data. 3) Vagueness around data security and research transparency is a barrier. 4) Data collection by smart devices was mainly perceived as a facilitator. Smartphones are a normal part of everyday life and can make data sharing quick and easy. 5) Lack of technology and special needs are the barriers for vulnerable population groups. 6) Perceived usefulness is a facilitator of data sharing. 6) Lack of usefulness is a barrier because it contributes to demotivation. 8) Respondents discussed the willingness to share the data in the context of data sharing norms and culture, and 9) Perceived contextual threats. Younger generations already use smart devices to share personal information; however, they acknowledge potential data breaches.
Conclusion Respondents viewed university researchers as trusted partners and expressed willingness to share the data because of perceived public benefit. The critical issues to address are: 1) ensuring transparent communication of research processes, 2) how to maximise the perceived usefulness of data sharing, and 3) how to include all population groups in public health research which utilises smart devices and standardised questionnaires.
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