Genomics Partnership Wales are looking for those with direct and/or indirect ( as a loved one or carer of someone) lived experience of inherited cancer to join their Public and Patient Sounding Board. Help develop future of genomics services in Wales by sharing your experiences to shape policies, care pathways and research.
What is required?
Ten people are required to become members of the Patient and Public Sounding Board. You will be required to attend a one-day induction and training on Tuesday 2 July (09:30-15:30) and four meetings per year. The first meeting will be held on Wednesday 3 July (09:30-15:30).
The team would like to meet with you if you are shortlisted (either online or via telephone) to discuss the role and what is required to be part of the Patient and Public Sounding Board.
A role description for the Sounding Board can be found here.
Who can get involved?
People who:
- have personal (or care for someone who has) experience of genetic testing / genomics / precision medicine / clinical trials / inherited cancer / rare diseases / developmental delay disorders
- have good communication skills
- can represent under-served from groups
- don’t have professional experience of working in the field of genomics
- are available to attend (virtual) induction training on Tuesday 2 July and first meeting on Wednesday 3 July
Background information
- Genomicsis the study of a person’s genes (the genome), including how those genes interact with each other and the person’s environment.
- Geneticsis the study of genes and how they can be passed on, inherited.
Both play an increasingly important role in improving personal and public health, contributing to disease diagnosis, prevention, treatment and surveillance.
Genomics Partnership Wales was created to bring experts from across different health specialties together to make sure patients benefit from getting the correct genetic testing when they need it.
The Genomics Partnership Wales Patient and Public Sounding Board aims to represent the people of Wales and work to improve patient experiences and clinical service delivery that will allow for better health and wellbeing of the population.
What reward is offered for taking part?
Genomics Partnership Wales will:
- Cover reasonable travel expenses in line with their host organisation guidelines
- Offer payment for time of £25 per hour (people can request less if they are in receipt of state benefits)
What further support is available?
A one-day induction training to introduce the subject matter, ongoing support and information when specialist topics arise.
If you are interested in applying and would like to hear more from a current Sounding Board member about the role, contact the team by email at GenomicspartnershipWales@wales.nhs.uk who can put them in touch with an existing member.
How do I register my interest?
For more information and to complete an Expression of Interest, please click here.
