Genomics England welcomes new chair of Participant Panel
Genomics England is delighted to announce the appointment of Kirsty Irvine as the new Chair of the Participant Panel.
Formed in 2016, the independent Participant Panel is a key advisory group for Genomics England, working to ensure that the voices of participants, their families and their experiences inform its work. It is made up of a diverse group of people who have consented to donating their or a family member’s data to the National Genomic Research Library and who bring their experiences of rare conditions or cancer.
As the Chair of the Participant Panel, Kirsty will play a central role in ensuring participants are at the forefront of research efforts and decisions, advising on who has access to participant data and how it is used, and ensuring participants' experiences are used to inform future design of genomic services.
Kirsty, a passionate advocate for patient and participant involvement and a qualified solicitor, also brings a wealth of lived experience as a health research participant and carer. She has taken part in several maternity-related research studies and previously joined the 100,000 Genomes Project along with her family.
She was a founding lay member of the Independent Group Advising (NHS Digital) on the Release of Data (IGARD), formed in 2017, and chaired IGARD from 2018 until its close in early 2023. Following NHS Digital's merger into NHS England, Kirsty was invited to chair AGD from its interim inception to date. In these roles, Kirsty advised on safe and trustworthy health data practices, helping to maintain public trust and confidence in the use of patient data.
As well as her involvement in IGARD and AGD, Kirsty has previously acted as chair of her local GP practice's patient participation group, is currently a lay examiner for the Royal College of Obstetricians and Gynaecologists, and a supporter of various maternal and child health-related charities.
“We are thrilled to welcome Kirsty as Chair of the Participant Panel. Her experiences and passion for putting patients and participants first make her the perfect fit to represent them and champion the interests of those with rare conditions and cancer. Her leadership will be instrumental in strengthening our commitment to placing participants at the core of our mission to advance genomic research and healthcare.
“I would also like to thank Helen White and Adam Clatworthy for their outstanding work in providing interim leadership for the Participant Panel while the recruitment process for the new Chair was taking place. They have both done a fantastic job and ensured that with Kirsty’s appointment and their continued role as Vice Chairs the Panel is well-placed for continued success.”
Dr Rich Scott
Chief Executive Officer of Genomics England
“I’m absolutely delighted to be stepping into this well-established role. Participants are at the heart of everything Genomics England does, and I’m looking forward to amplifying their voices even more. Together, we’ll keep challenging, shaping, and driving forward the incredible work being done here.”
Kirsty Irvine
Chair of the Participant Panel
“On behalf of the Participant Panel, we extend a warm welcome to Kirsty as our new Chair. Kirsty's impressive background and dedication to patient advocacy make her an ideal leader for our committed team.
“We are incredibly excited to embark on this next chapter with Kirsty at the helm, and we look forward to collaborating closely with her to ensure the voices of participants remain at the forefront of Genomics England's vital work."
Adam Clatworthy, Vice Chair for Rare Conditions and Helen White, Vice Chair for Cancer
For more information on the Participant Panel and its role at Genomics England, click here.
