Working with the public throughout BRAID to ensure federated brain research reflects societal values, addresses concerns, and meets public expectations.
Public Involvement and Engagement (PIE) is woven throughout the BRAID project, not added as an afterthought. Our programme is guided by the DARE UK PIE Guidelines and aligned with best practice promoted by PEDRI (Public Engagement in Data Research Infrastructure) — the national network supporting high-quality public engagement across UK data research programmes. Claire Newman (SAIL Databank, Swansea University) serves as a PIE lead for BRAID, bringing extensive expertise in public engagement for data-intensive health research.
Our PIE activities are structured around the AREA-4P framework (Anticipate, Reflect, Engage, Act – Process, Product, Purpose, People), ensuring that public perspectives genuinely shape technical design decisions, communication strategies, and the responsible development of federated technologies.
Exploring ethical, social, and technical implications of federated analysis methods and the TRE technology stack before and during development.
Critically examining data access, representation, and fairness in how brain frailty research is conducted across distributed environments.
Involving people with lived experience alongside technical and governance experts from TREvolution, SACRO, and the Federated Analytics team.
Embedding continuous risk identification, communication of risks, and mitigation processes directly into project sprints and technical design decisions.
Claire is a leading public-engagement specialist in data-intensive health research. She manages the SAIL Consumer Panel and has pioneered hybrid workshops and multimedia consultations adopted as best practice across DARE-UK and HDR-UK. Claire's Consumer Panel framework ensures patient and public perspectives meaningfully inform data-intensive research.
PIE activities are planned across the full 12-month project timeline, engaging diverse public voices at each phase. This timeline will be updated as activities take place.
Introductory workshops with members of the public and the SAIL Consumer Panel to co-design the PIE programme. Participants will help set the agenda for engagement, identify key questions about federated technologies, and establish ground rules for ongoing involvement.
Objective: Establish public advisory input into BRAID from day one.
Structured workshops exploring public understanding and attitudes towards Trusted Research Environments, data federation, and the use of brain scan data in health research. Sessions will use accessible multimedia materials developed with public contributors.
Objective: Document baseline public perceptions of TRE infrastructure and data use.
As BRAID pipelines are developed, public contributors will be invited to review workflow transparency materials, plain-language explanations of disclosure controls, and how brain frailty data is handled across TREs. Feedback directly informs technical design decisions.
Objective: Ensure public understanding and trust in federated neuroimaging pipelines.
Deeper engagement on responsible innovation themes: algorithmic fairness, the meaning of "brain age" models, and how AI-derived predictions about brain health should be communicated to patients and clinicians. Includes people with lived experience of neurological conditions.
Objective: Shape communication strategies and ethical framing of BRAID outputs.
Public contributors are invited to review a summary of BRAID's technical findings and provide a "sense-check" on how findings are framed and communicated. Their perspectives feed directly into the project's best-practice guidance documents.
Objective: Co-produce dissemination materials that reflect public values.
Production of an anonymised public summary report synthesising views, concerns, and recommendations gathered throughout the PIE programme. This report will be shared openly and will inform future DARE-UK federated infrastructure projects.
Objective: Leave a lasting record of public perspectives for the DARE-UK community.
We actively seek to engage participants from diverse backgrounds, including people with lived experience of neurological conditions, cognitive decline, and frailty.
Public input is documented and traced to specific project decisions. We report back to participants on how their contributions have shaped the work.
All PIE activities are conducted openly. Findings including challenges and concerns raised are captured in anonymised reports shared with the community.
All activities align with the DARE UK PIE Guidelines, ensuring measurable outcomes and co-design at every stage.
Are you a member of the public interested in participating in BRAID's workshops or advisory activities? We welcome diverse perspectives on brain health, data privacy, and federated technologies.
Contact details for public involvement enquiries will be added here when the project opens for recruitment (April 2026).
Learn more on DARE UK ↗