Use of population and administrative data has intensified ethical scrutiny around data security, representativeness, and research validity. Public trust has been weakened by data misuse, limited transparency, and poor alignment with community priorities. Existing engagement approaches are often inadequate for data-intensive environments where public roles and effective engagement remain poorly understood. In response, UK partners across disciplines and sectors established the Public Engagement in Data Research Initiative (PEDRI) and co-developed Good Practice Standards for Public Engagement in Data for Research and Statistics, alongside a public pledge. A PEDRI Frontiers meeting in June 2025 convened 60 stakeholders from government, regulation, industry, academia, community organisations, and the public. Participants compared the Standards with frameworks in their fields, examining their relevance to different publics and communities and highlighting strong alignment. Discussions focused on public engagement in statistics, administrative data, equity, diversity and inclusion, industry research, and artificial intelligence. This presentation will explore key insights, including evidence that involving the public as active partners in data use increases the relevance and impact of research while enabling communities to influence agendas and secure meaningful benefits. Definitions of “the public” vary across sectors and often require a broader, needs-based focus on what end users value. Participants mapped the Standards to existing frameworks in ethics, psychology, anthropology, political theory, and communication science. Cross-disciplinary mapping revealed trust as foundational, spanning transparency, accountability, and reciprocal benefit. The PEDRI Standards are enabling more democratic, effective, and socially accountable approaches to public engagement in data research.
Doreen Tembo, Samaira Khan, K. Porter et al.· International Journal of Pop...· 0 citations
International data transfer rules, designed to protect individuals, often create barriers to collaborative research by imposing constraints misaligned with modern data ecosystems. Frameworks like GDPR and UK GDPR can unintentionally hinder scientific progress by failing to recognise the safeguards provided by emerging technologies. More nuanced legal approaches are needed to preserve privacy while enabling responsible international research. We will examine how privacy-enhancing technologies (PETs) can help address these challenges. Informed by insights from pilot projects under the Alzheimer’s Disease Data Initiative which seek to address critical dementia questions, while expanding dataset access. With dementia cases projected to rise globally from 57 million to 153 million by 2050, this work demonstrates the urgent need for cross-border data sharing in brain health research. Specifically, we will explore how PETs offer pathways through regulatory barriers, and how Trusted Research Environments (TREs), aligned with the Five Safes Framework, provide strong safeguards to prevent identifiable data disclosure. We will demonstrate how remote querying techniques enable international analysis without data transfers, as researchers receive only aggregate results. The presentation will address persistent challenges: under European Data Protection Board guidance, even viewing data across borders constitutes a transfer, meaning TRE access may trigger complex compliance requirements despite technical safeguards. We will explore the rapidly evolving landscape through new UK legislation, the European Health Data Space, and emerging case law. Finally, we will discuss whether PETs can bridge the gap between privacy protection and scientific progress, and what regulatory adaptations are required to recognise the protections they provide.
Edel McNamara, Cassie Smith, Neil Postlethwaite et al.· International Journal of Pop...· 0 citations