Do you have an inherited cancer, rare disease or experience of genetic testing?

Help develop future of genomics services in Wales by sharing your experiences to shape policies, care pathways and research.

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

For a more in-depth list please see the role description.

You need to be registered with the involvement community to submit an expression of interest. Members of the public who have not registered are invited to submit a registration form to become part of the involvement community.

Background information

• Genomics is the study of a person’s genes (the genome), including how those genes interact with each other and the person’s environment.
• Genetics is 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 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.

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)

For those in receipt of state benefit confidential advice is available via the Benefits Advice Service for Involvement.

As a registered member of the community, you will also have access to support from the public involvement team and the Health and Care Research Wales training programme.

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?

Complete an expression of interest (EOI) form

Not sure how to complete an expression of interest or would you like to discuss an opportunity further? Then the team can help you. Simply complete the online form or contact us by email to set up a chat.

Access to expressions of interest is secure, restricted and dealt with confidentially.

Next steps

The Communications, Engagement and Involvement team is advertising this opportunity on behalf of the opportunity lead (researcher and/or other professional) to find members of the public to be involved in their work.

We will review and send on appropriate expressions of interest to the opportunity lead (researcher and/or other professional).

You will be contacted either by the team or by the opportunity lead (researcher and/or other professional).

If you have any questions, please don’t hesitate to contact us by email or call 02920 230 457.