Continuing the legacy: Keeping participants at the heart of Genomics England
By Adam Clatworthy and Helen White onThe Participant Panel is a key independent advisory group for Genomics England, who work to ensure that the voices of patients, their families, and their experiences inform the work that we do.
In this blog, Adam Clatworthy, Vice-Chair for Rare Conditions, and Helen White, Vice-Chair for Cancer, share their experience of leading the Participant Panel at Genomics England during a period of change and uncertainty.
A time of change
Imagine facing a life-changing health condition, then discovering that your own genetic information could hold the key to scientific breakthroughs that may help you as well as countless others. Now, imagine being motivated by this experience to join with others, forming a collective voice that advocates for the needs and interests of people like you, and not like you.
That's the power of the Participant Panel at Genomics England - a dedicated group that brings patient and participant voices to the heart of genomic research, helping to shape the future of healthcare for those facing their own unique challenges.
For the past 7 years, this vital panel has been expertly steered by Jillian Hastings Ward MBE and Rebecca Middleton, who have guided it through its many successes. Now, with the torch carefully passed to us, we’ve been guiding the Panel through this period of change.
Stepping into Jillian and Rebecca’s shoes has been a daunting task, but one we've embraced with a mix of excitement and determination.
Vice-Chair for Rare Conditions, Adam Clatworthy with his family
Our focus so far
As Vice-Chairs for Rare Conditions and Cancer, we each bring unique perspectives to the table – driving research into the super-rare condition CRELD1, and advocating for people with genetic predisposition to cancer and gynaecological cancers, respectively.
This change in leadership has brought fresh energy to the Panel and an opportunity to step back and think about the Panel’s strategy for the next few years. Together, we represent over 20 individuals, each with their own powerful stories and passions; but united by a common goal.
We’ve spent a lot of time listening to all members of the Panel, keen to deeply understand their experiences and priorities, so that we can represent them - and the wider community - as best we possibly can.
Our immediate focus has been on continuing to nurture a strong sense of community and shared purpose within the team, ensuring that everyone’s voice is heard. By actively listening to feedback and turning ideas into action, we’ve committed to making real progress - because we believe that true progress is an ongoing journey, not a destination.
What’s on the horizon for us now?
While establishing a solid framework for the Panel remains crucial, we are also focused on ensuring that the lessons learned from the 100,000 Genomes Project are effectively applied to Genomics England’s new initiatives, such as the Generation Study.
Our mission now is to enrich our Panel with voices from other groups – such as those involved in the Diverse Data initiative and the Generation Study - ensuring that the Panel truly reflects the experiences and needs of these communities.
At the same time, we are well aware that many participants of the 100,000 Genomes Project are still awaiting a diagnosis. We understand the need for clear communication and answers, and representing these individuals remains our primary goal. We will not leave 100,000 Genomes Project participants behind.
Paving the way together
Working together as a leadership team has been invaluable. One of us brings legacy knowledge, while the other brings a fresh perspective – resulting in ideas that we otherwise might not have considered.
In the process of appointing Kirsty Irvine as the new Chair, we worked closely together to set the stage, ensuring that the Panel was set up for a smooth transition and a productive future. Our goal was never to simply act as ‘caretakers’ during this period. Instead, we’ve remained actively involved in discussions with teams at Genomics England, CEO Rich Scott, and external organisations, to continue advancing the Panel’s key strategy.
It has also been important for us to make room for Kirsty's insights, to ensure that she has a say in shaping the future of the Panel too.
Vice-Chair for Cancer, Helen White in sunny Dorset
Lessons from leadership
In our work together, we regularly reflect on the lessons we’ve learnt since taking on our leadership responsibilities. We understand that serving in a leadership role is a true privilege, one which requires putting our own causes aside to advocate for what’s best for the wider patient and participant community.
We also recognise that our journey as Vice-Chairs together has only just begun, and that it will continue to evolve now that the new Chair is appointed. However, the months we’ve shared so far have cemented a strong working relationship, laying the groundwork for us to continue building on.
We are constantly learning - from each other, from other Panel members - all of which helps us gain new perspectives and improve the way we work. We’re excited to see where this journey takes us, and are committed to driving positive change for the communities we serve.
The future of the panel
The Panel is an incredibly active and engaged group, there are so many potential areas we could invest our time and efforts into. That’s why one of our first priorities is to ask: “What do we want to achieve over the next year, and where can we make the greatest impact?”.
A key priority is finding the balance between aligning with Genomics England’s strategy, and staying attuned to the needs of the wider participant community. This means understanding where Genomics England sees us making the greatest impact, while also ensuring we’re driving greater accessibility, equity, and understanding in this rapidly evolving field.
We’re excited to see what the Panel can achieve next and look forward to continuing to lead this passionate team in partnership with Kirsty. Our commitment remains to represent the participant voice as best we can, ensuring it remains at the heart of everything that Genomics England does.
And finally…
If you want to get involved or learn more about the impact of the panel, check out our Participant Panel webpage, or, you can also read some of our Participant Stories.
