Our Participant Panel's Vision: Shaping the future of genomics together

It's hard to believe it's already been a year since I stepped into the Vice Chair role for Rare Conditions on the Participant Panel at Genomics England. Stepping into very large shoes, this past year has been an incredibly insightful journey, offering me a unique opportunity to connect with each Panel member and truly understand their personal motivations and experiences. 

For me, it's also been a huge learning curve – grappling with imposter syndrome and trying to get my head around the complexities of the genomics world as quickly as possible! 

These invaluable insights, both personal and shared, have been instrumental in shaping our newly developed Participant Panel Strategy Document, a crucial roadmap that will guide our efforts over the next few years.

Why a Strategy Document?

You might be wondering, why now? The truth is, as Genomics England continues to evolve and push the boundaries of genomic healthcare, it is more important than ever for the Participant Panel to have a clear and focused direction. This strategy document isn't just a formality; it's a living commitment to our shared goals, and a testament to the vital role participants play in this exciting field.

Our Panel holds a unique and powerful position within Genomics England's governance. We're not just an advisory body; we're actively involved in making decisions across various committees, providing constructive challenge, and ensuring that the wider participant community remains central to every initiative. 

This document solidifies our priorities, allowing us to align even more effectively with Genomics England's future strategy and maximise our impact. 

You can find the strategy document on the Participant Panel webpage. 

Our key priorities: a participant-centred approach

So, what are our key priorities for 2025-2026? They're all designed with our broader participant community at the heart of everything we do:

Improving participant experiences through effective communication: We want to ensure participants are always informed. This means better information sharing about how participant data is used, research outcomes, and success stories. We'll be pushing for dedicated communications across diverse channels, and stronger links with patient advocacy groups.

Promoting greater public and patient involvement and engagement (PPIE) in research: Our voices matter in research. We're advocating for clearer explanations of what meaningful involvement really looks like. We’re also encouraging Genomics England to develop clear plans that help researchers using our data connect with participants, patients, and their carers, ensuring that PPIE remains a priority at every stage of the research cycle.

Strengthening the Participant Panel’s ability to advocate for participants: We're committed to holding Genomics England accountable for its promises, from seeking answers for 100,000 Genomes Project participants with rare conditions, to applying key learnings to new projects like the Generation Study. We're also dedicated to increasing the diversity of our own membership, ensuring we truly represent the rich tapestry of individuals who donate their data for genomics research. This includes reaching out to under-represented and historically marginalised communities, and ensuring all our communications are fully accessible.

Ensuring the Participant Panel is involved early in major Genomics England initiatives and key decisions: We believe early engagement is crucial to ensure all participants are fairly represented from the very beginning of any new initiative. We'll continue to advocate for this early involvement and provide valuable feedback to help shape outreach and engagement strategies.

A Collaborative Future

This strategy document is a powerful tool, not just for the Panel, but for every participant. It reflects our collective commitment to helping everyone benefit from genomic healthcare. 

As we move forward, we're excited to collaborate even more closely with Genomics England, working together to shape a future where participant voices are heard, valued, and instrumental in driving progress.

Reflections from Kirsty Irvine, the new Chair of the Participant Panel

Stepping into the role of Chair at such a pivotal moment is both an honour and a responsibility I deeply value. I want to extend my thanks to Adam, Helen (Vice Chair for Cancer) and the entire Participant Panel for the dedication and insight that went into developing this strategy document. It reflects not only where we've been, but where we're committed to going - together.

This strategy sets out a clear, participant-centred vision for the future, and I’m proud to stand behind it. From improving communication and ensuring early involvement, to strengthening our capacity to advocate and widening representation, every priority speaks to our collective ambition: to ensure participant voices are not only heard, but truly shape the future of genomic healthcare.

As Chair, my focus will be on bringing this strategy to life - through action, collaboration, and continued accountability. I’m excited to work alongside this passionate Panel, our partners at Genomics England, and most importantly, the participants and communities we serve. 

Together, we’ll keep pushing for a future where genomic progress benefits everyone, equally and inclusively.