Time: 15:00 – 16:15
Location: Jenner (Ground floor)
Presentation type: Workshop
Theme: Public Engagement Across the Data Research Lifecycle
Chair: Jan Speechley (Public Partner)
Workshop leads: Fatemeh Torabi (1,2), Reshma Pandit (2), Antony Chuter, Jillian Beggs
1 University of Cambridge, 2 Swansea University
Abstract
CONNECT-AF is an ongoing DARE UK real-world research exemplar that explores how federated analysis across Trusted Research Environments (TREs) can support population-level cardiovascular research focusing on patients with Atrial Fibrillation (AF). Alongside its scientific and technical aims, the project embeds public involvement across the research lifecycle, from shaping the relevance of research questions and patient pathway definitions through to informing governance, communication, interpretation, and dissemination.
This workshop uses CONNECT-AF as a live case study to explore how public contributors can meaningfully shape complex data-driven and statistics research. In alignment with PEDRI’s vision of a world where everyone has a role in data for research and statistics, the session will consider how public voices can inform responsible, ethical, and impactful data use. Participants will consider how public involvement can support transparent communication about linked health data, TREs, federated analysis, disclosure control, and the interpretation of population-level findings. The session will also explore practical ways to support meaningful, inclusive involvement and communicate technical concepts through accessible, trust-building dialogue.
Our proposal is for a 60-minute workshop with three core components: a case examples from CONNECT-AF (15min talk by project team), guided discussion (15 min), practical lifecycle mapping (20 min) and final reflections (10 min). The aim is to share the emerging lessons from our project and to support participants to identify how public involvement can strengthen complex projects, from design and governance through to analysis, interpretation, and dissemination. Through interactive activities, participants will explore how to create meaningful and manageable public input streams to shape both the scientific and technical dimensions of data-driven research, and develop practical strategies for supporting inclusive involvement, strengthening transparency and accountability, and building public trust in complex data research.