Case Study
Background
In December 2022, the Health Service Executive unveiled the National Strategy for Accelerating Genetic and Genomic Medicine in Ireland. The objective of the Deliberative Dialogue on Neurogenomics was to ensure that the implementation of the strategy incorporated the perspectives of people living with a neurological condition, families, clinical and research stakeholders.
Contributors to the Deliberative Dialogue meeting
Links to Our Research
Our Diagnostic research strand relies on genomic research. Prof. Cavalleri is co-leading the national participation in the Genomic Data Infrastructure programme and the bid for the 1+ Million Genomes Initiative. The learnings from this activity were designed to inform our genomics research programme and facilitate the integration of the Irish citizen voice in the Genome-of-Europe project, which aims to build a European network of genomic reference cohorts of over 500,000 citizens.
Inputs
With 19 FutureNeuro team members and the RCSI PPI Ignite Award coordinator, this activity was meticulously planned. The PPI Ignite Award was funded by a national funding agency to aim to promote PPI in health research in Ireland, and €5,971 was contributed from the Ignite award towards the planning and organisation of this programme. Roles included event format development, round-table moderation, output capture, and report preparation. Specialist training and a graphic artist enhanced the dialogue on the day.
Post-it notes with ideas from the discussions.
Two people in discussion at the meeting.
Outputs and Outcomes
Building on the IPPOSI-led Citizens Jury on Genomics, Prof. Cavalleri formed a multi-stakeholder steering group to address the overarching question: “How can genomics improve the health of people with neurological conditions in Ireland?”, and encourage participants to explore this in conversational rounds. The event involved 35 representatives, including patient advocates, carers, specialist genomics and neurology clinicians, researchers and policy makers. The final report was presented to representatives from the HSE, the National Genomics Office and from the above stakeholder groups at a report launch event held in RCSI in April 2023.
Key outcomes include informing the National Genomics strategy, enhancing public engagement, and leveraging genomic research benefits. By translating genomic discoveries, we hope to accelerate patient diagnosis, contributing to more effective policy making, stronger public engagement, and the practical application of fundamental research.
