Unlocking Sensitive Data for Research: Breaking Barriers, Seizing Opportunities, Rethinking Consent

Abstract

Accessing and utilising sensitive data remains a complex endeavour arising from regulatory constraints, ethical considerations, the need for public trust, and resultant technical challenges. Based on healthcare data in the United Kingdom (UK), this panel of interdisciplinary specialists will examine collaborative models that respond to these challenges, focussing in particular on participatory governance and socio-technical responses that deliver ethical and efficient data sharing. With responsible data governance, research can drive transformational patient outcomes and guide evidence-based policy in health and care services. We will discuss how healthcare organisations, policymakers, community stakeholders, and citizens can work together to co-produce secure data environments that provide interoperability and ethical frameworks for collaborative healthcare data analyses. The conversations will highlight case studies of collective decision-making, as well as frameworks that enable cross-sector cooperation in health data governance and research. Through an interdisciplinary, cross-sector, and interactive format, this panel will provide insights into best practices for collaborative data work for research that foster ethical and privacy-preserving data-sharing functions, and public trust. Through identifying pathways that promote data access while maintaining ethical integrity, the panel discussions will contribute to releasing the potential of healthcare data for societal benefit in the UK and globally.