JMIR Publications

ABSTRACT

Background:

Internet use data could offer digital signals of early disease. Initial research shows promise, but there are significant challenges in linking individual level internet use data with health outcomes. One key aspect is public willingness to share data for research.

Objective:

Our study aimed to investigate public perspectives on sharing internet use data for medical research to identify key criteria that affect willingness to share internet use data.

Methods:

We conducted a web-based, cross-sectional survey using quota sampling with a 3x2 randomisation design. Participants were randomised to explore willingness to share different types of internet use data for three health conditions (cancer, heart disease, and depression) and provision of a pictorial example of internet use data. Logistic regression analysis for each condition was used to determine key factors of willingness to share, including socio-demographics and attitudes towards sharing. Open-ended comments regarding facilitators of sharing and concerns were analysed thematically.

Results:

N=2390 participants across the UK completed the survey. Willingness to share internet use data was high across conditions (74-77%; 95% CI 70.5-80.3), especially for health app data (73-76%; 95% CI 69.8-79.1). The pictorial example of browsing history did not affect willingness to share. For all conditions, factors consistently associated with willingness to share were perceived benefits (ORs=5.692-8.850, all P<.001) and concerns (ORs=0.343-0.432, all P<.001). Key concerns were data privacy, potential for misuse, and lack of relevance. Suggestions to increase willingness to share included perceiving a sense of contribution to society and research, data security assurances, clarification of research purposes, and monetary incentives. Familiarity with internet use data was related to lower willingness to share for detection of heart disease (OR=0.740 [95% CI: 0.561-0.976]). Asian and British Asian ethnicity was associated with lower willingness to share internet use for cancer detection (OR=0.234 [95% CI: 0.076-0.723]). Younger age (OR=0.975 [95% CI: 0.951-0.999]) and male gender (OR=2.615 [95% CI: 1.511-4.526]) were associated with higher willingness to share data for detection of depression.

Conclusions:

Public willingness to share internet use data for research into early detection is high. Whilst the benefits of this research drive participation, there is lack of understanding about internet use data and concerns remain around data privacy and potential for misuse. Researchers must clarify research purposes, limit data use to this purpose, and prioritise data protection. Future studies should explore how medical internet research can be communicated with the public, especially with groups that face inequalities in early detection or who may be less willing to share data. Ensuring equal participation is crucial for using digital data to its full potential in improving early detection.