Would you like to get involved in the work of the Alliance?
We'd love to hear from you.
Our vision places the patient and their voice at the heart of everything we do. We are working to build awareness and trust in genomics within the communities across the North West, providing clinical leadership to enable healthcare professionals to use genomics safely, effectively, and efficiently to embed genomics into routine healthcare, delivering better, quicker diagnosis of rare conditions, and personalised treatments and care for people with inherited conditions and cancer.
As part of our communication and engagement strategy, we have recruited individuals, from across the North West to our Patient and Public Voice Panel (PPVP), but it is important that we hear from all areas of the population across the region including those who may use or may have had cause to use healthcare services, but who are less likely to have the opportunity to share their experiences.
How to apply: A copy of our application pack and application form is available below but if you would like to discuss the role in more detail prior to applying, then please contact barbara.coleman@nw-gmsa.nhs.uk to arrange an informal chat.
Our Patient and Public Voice Panel (PPVP) will help ensure that the views and opinions of patients, carers, and families are at the heart of everything we do, in support of embedding genomics into routine healthcare across our region.
The PPVP will inform discussions and decision-making, and challenge our thinking. The panel will review patient and public-facing communications and be involved in our genomic transformational projects.
The role of the PPVP will and should evolve over time, with a wide range of engagement and involvement opportunities being available to members of the panel. We have already recruited a Chair for the PPVP and we are in the process of recruiting a Vice Chair.
We are interested in hearing from people with lived experience of genetic testing – either as a patient, carer, or family member, within the last two years but we also welcome applications from members of the public without experience in genetic testing but with an interest in improvements in the NHS.
We are particularly keen to have representation from the following groups who are currently under-represented:
- Young adult (18 years +)
- People identifying as LGBTQIA+
- Individuals from minority ethnic background
Ideally, you will live or have received care in the North West of England region, or have a connection with the area. As mentioned earlier, all applications are welcomed.
We have adopted a tiered approach to our PPVP, so that varying degrees of availability to be involved are possible, so that everyone who wishes to, can get involved.
We plan to hold quarterly virtual hourly meeting. A weekly PPVP bulletin is produced and circulated via email and online via the PPVP Bulletin Board, so that any new opportunities and updates can be shared with the panel.
A full description of time commitments is available in our Application Pack, available to download via the link below, and which includes information regarding expenses in line with NHS policy.
During 2022 and 2023, we held a mixture of hybrid, face to face and online meetings to ensure that every panel member had the opportunity to attend. We hold our Annual General Meeting each November, and this is a hybrid event i.e. face to face at a central Manchester location, as well as available online via Microsoft Teams. Moving forward, it is likely that all meetings will be held online.
Agenda items are normally shared 7-10 days prior to the meetings, and the panel are canvassed for any topics they would like to discuss at the meetings.
If/when travel becomes applicable for members of the PPVP, where a physical presence at a meeting is required, then agreed travel expenses will be reimbursed in line with the NHS guidelines. There will always be an option to join virtually.
This is primarily a voluntary role, with reimbursement of 'out of pocket' expenses paid but some requests from the Alliance to the panel may offer 'Thank you' payments on a case by case basis to all members, in line with NHS Expenses policy.
For more information, please review the attached Application Pack.
This is currently one year, at which point membership of the panel can be reviewed.
A person specification is available within the Application Pack.