JMIR Publications

ABSTRACT

Background:

Health research utilising commercial data is increasing. The evidence on public acceptability and socio-demographic characteristics of individuals who are willing to share commercial data for health research is scarce.

Objective:

This survey study investigates the willingness to share commercial data for health research in the UK with three different organisations (government, private and academic institutions), five different data types (internet, shopping, wearable devices, smartphones and social media) and ten different invitation methods to recruit participants to research studies with a focus on sociodemographic characteristics and psychological predictors.

Methods:

An online survey using quota sampling based on the age distribution in the UK was carried out in July 2020 (N=1534). Chi-squared tests tested differences by sociodemographic characteristics and adjusted ordered logistic regressions tested associations with trust, perceived importance of privacy, worry about data misuse and perceived risks and perceived benefits of data sharing. Results are shown in percentages (%), adjusted odds ratios (aOR) and 95% confidence intervals (95% C.I.)

Results:

Overall, 61.1% (N=937) of participants were willing to share their data with the government and 61.0% (N=936) with academic research institutions compared to 43.1% (N=661) with private organisations. Willingness to share varied between specific types of data, from 51ç8% (N=794) for loyalty cards, 35.2% (N= 540) for internet search history, 32.0% (N=491) for smartphone data, 31.8% (N=488) for wearable devices data and 30.4% (N=467) for social media data. Increasing age was consistently negatively associated with all outcomes. Trust was positively associated, whereas worry about data misuse and perceived importance of privacy were negatively associated with willingness to share commercial data. Perceived risk of sharing data was positively associated with willingness to share when participants considered all the specific data types, but not with the organisations. Participants favoured postal over digital research invitations.

Conclusions:

This age representative study shows that willingness to share commercial data for health research varies, however, researchers should focus on communicating their data practices effectively to minimise concerns about data misuse and improve public trust in data science. The results of this study can be further used to consider methods to improve recruitment strategies in health related research as well as to improve response rates and participant retention.