Patient Involvement
in CanGene-CanVar

Patient Reference Panel

Our core group of patients and public members involved across all areas of the programme on an ongoing basis

Patient and Public Involvement Activities

One-off or short-term opportunities to get involved in specific projects within the CanGene-CanVar programme 

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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

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