Patient Involvement
in CanGene-CanVar
The Patient Reference Panel
The Patient Reference Panel (PRP) is made up of 12 patients, carers and members of the public who are, or have been, affected by cancer and have an interest in genetics.
The panel was set up in 2020 to ensure that the patient/public views regarding the release and use of nationally collected datasets are incorporated into the project recommendations; to work closely with the team to develop and test patient decision tools; to act as a place for discussion and decision-making about the public/patient perception of risk; and to act as ambassadors for the programme itself.
The members of the panel are a tight, respected and engaged group who come from a wide range of backgrounds and act in an advisory capacity to the research programme.
Lesley Turner, Chair of the PRP
25th March 2022
Meet Our PRP Members
Lesley Turner
Chair of the PRP
"As a Breast Cancer Patient I believe that patients are at the heart of the CanGene CanVar programme, as we are now moving from clinician driven remedial medicine to patient owned preventative wellness. There is a strong public interest in the area of genetics, and patients, as the ultimate stakeholders, are helping develop tools and decision aids; thinking about ethics regarding release of datasets; and communicating issues and options."
Richard Stephens
PRP Member
"I am a survivor of two cancers and side and late effects of treatment, as well as familial conditions such as hypertension. I have been a patient advocate in research since 1998, including roles with NCRI, NIHR, NHS, Genomics England and some international and industry work too."
Helen White
PRP Member
“Finding out I had Lynch syndrome following my womb (endometrial) cancer diagnosis meant I could take action to reduce my risk of developing other cancers and, equally as important, my family could be tested too. Finding more people with genetic cancer susceptibility conditions is key to offering them similar opportunities to prevent cancer or detect it sooner - I hope as part of the Patient Reference Panel I can help make this happen.”
Caroline Dale
PRP Member
"I was diagnosed with triple negative breast cancer five years ago and tested positive for BRCA 2 mutation which not only impacted on myself but also on my 3 daughters one of whom tested positive and as a results has been able to pursue preventative surgery. It is so important to engage with patients and their families to encourage testing as in my experience people are wary of what testing can mean to them but it is clearly key to preventative medicine."
Rochelle Gold
PRP Member
"I am co-founder of a voluntary organisation that raises awareness of the BRCA genetic mutations amongst health professionals and the community. I have been lucky enough to benefit from genetic testing that has given me knowledge about my increased risk of certain cancers and the opportunity to have the choice to have preventative surgery. I got involved in CGCV so that others could be empowered with that knowledge and have the opportunity to prevent cancer too."
Frankie Vale
PRP Member
"My name is Frankie, I’m a student living in Edinburgh. I became involved in CanGene-CanVar to make the best of my situation as a young person with the BRCA2 gene mutation."
Julie Young
PRP Member
"My name is Julie Young, I am a carrier of Lynch Syndrome and this is where I found out about the CanGene-CanVar PRP. It is an honour to help out in any way possible because this work is so important to genetic cancer and associated prevention or treatments and also raising awareness."
Sue Duncombe
PRP Member
"I’m passionate about improving the early diagnosis of cancer and see CanGene-CanVar as an opportunity to do this. I know from the experiences of family members what an impact this can make"
Steve Worrall
PRP Member
A professionally qualified banker living in East Lancashire, inherited HNPCC (MSH2) with regular screenings leading to a sub-total colectomy in 2012. Participated in CaPP2 and CaPP3, being keen to share life experiences with other families in a similar position.
PRP Involvement in CanGene-CanVar
Programme governance and oversight
Members of the Patient Reference Panel are involved in the Science Advisory Committee and contribute to our oversight meetings, to input and advise on the overall delivery of the CanGene-CanVar grant and ensure the patient voice and perspective is at the heart of planning our research activities and delivery of our milestones.
Planning and leading patient and public involvement activities
Activities designed to involve patients and the public in our programme are planned with members of our Patient Reference Panel to ensure that our recruitment materials and channels are diverse and tailored for the audience, as well as ensuring our activities are delivered mindfully and successfully.
Contributing personal perspectives and experiences
Listening to the views and perspectives of our Patient Reference Panel, as well as wider groups of individuals with lived experience of cancer and or genetic testing, helps us shape our resources and outputs. For example, co-design and development of a patient decision aid.
See more about our patient and public involvement (PPI) activities below.
Communication and dissemination of programme outputs
Spanning across all of the involvement areas our Patient Reference Panel supports the development of communication material and dissemination of the outputs from our programme, including contributing as speakers in our programme events and towards relevant scientific publications.
Patient and Public Involvement Activities
Examples of our PPI activities
Participating in 1:1 sessions and focus groups to understand people's experiences of making decisions after receiving a Lynch Syndrome diagnosis.
Providing feedback on proposed clinical management of DICE1 syndrome and patient-facing materials for carriers of a DICER1 inherited gene variant and their carers.
Attending a workshop to discuss the collection and use of patient genetic data, including preferred governance and access arrangements.
Get Involved
Opportunities open to Patient and Public Involvement (PPI) will be shared here.
If you are interested in getting involved in our Patient Reference Panel or wish to register your interest in getting involved with one-off activities, please email CanGene-CanVar@icr.ac.uk