Building public trust and confidence in secondary use of health data in Ireland

BACKGROUND: Secondary use of health data can drive research and healthcare improvements with implications for policy and practice. However, relevant legislation, implementation of technical safeguards, and ethical data management are essential. Existing evidence suggests general public support for secondary data use, but with specific concerns about privacy, confidentiality, misuse of data and trust. The aim of this study is to explore key stakeholders’ perspectives on secondary health data use in Ireland, and mechanisms to build a culture of trust. METHODS: The study adopts a qualitative cross-sectional approach. Participants include academics and researchers, healthcare professionals, data controllers and ethics experts, industry, and patients and public, recruited through purposive sampling. Data is collected through focus groups discussions, and reflexive thematic analysis is employed. RESULTS: The preliminary results suggest that benefits of secondary data use include access to large datasets, streamlined research, reduced bias, and cost-effectiveness, which may lead to improved patient outcomes. Barriers include an underdeveloped national data infrastructure, difficulties with access and linkage, complex ethical regulation, and narrow predetermined indices of health. Concerns related to data sharing are context-dependent, and influenced by patients’ socio-demographic characteristics. Trust appears to be both a bottom-up and top-down process, facilitated through clear communication, organizational openness, transparency, accountability, fairness, respect, and patient and public involvement (PPI). CONCLUSIONS: The study identifies strong support for secondary health data use among the stakeholders, notwithstanding an identified need for structural improvements, strong safeguards, education and training, and meaningful PPI. This research helps inform public health practice and policies towards building a culture of trust pertaining to secondary data use. KEY MESSAGES: • This study produces novel insights to help advance research and policy on the barriers and facilitators to building trust and confidence in the access and use of health data for secondary purposes. • This study contributes to qualitative research methods related to eliciting people's views and perspectives in a safe, collaborative and efficient manner.