The GEP invites you to join our patient advisory group to help shape the future of genomics education for NHS professionals
NHS England’s Genomics Education Programme has established a patient advisory group, Patient Advisors for Genomics Education (PAGE), to ensure the views of those with experience of the genomic testing process, and those who care for them, are integral to our work.
We meet regularly with the PAGE group to seek their input and views, and have featured some of their personal stories on our blog.
If you, or someone you care for, has experience with cancer or rare disease and, through this, has been through genomic testing, we would be delighted to hear from you.
You can find out more information about the group and what would be expected from you as a member in the FAQs below.
If you have further questions about participating in PAGE, please get in touch.
How can I join the group?
Please fully read the terms of reference document, and then fill out our expression of interest form.
Frequently asked questions
What kind of people are you looking for?
We are looking for individuals, or those who care for individuals, who have experience of genomic testing for rare disease and cancer. We welcome people from all ages and backgrounds.
Are you only looking for patients with a genomic diagnosis?
No. We welcome people with a range of experiences of genomic testing, whether you have received a genomic diagnosis or not.
I went through genomic testing three years ago. Can I still apply to join?
Absolutely. All experiences, even less recent ones, are valuable and important to us.
How often will the group meet, and what will the format be?
The group will meet either in person or online, three times a year, at a time and date agreed by all. All group members will have access to a virtual space created to share files and communications outside of the meetings. There may be further opportunities to advise on specific projects or join time-limited ‘task and finish’ groups for specific projects.
Will I be paid for my time?
Yes. We will pay your expenses for any travel to and from a group meeting. We will also pay you for any time you spend working on specific projects.
What will I do as part of the group?
The role of the PAGE group is to:
- input to the GEP’s work plan and proposals for education and training initiatives;
- provide insights and feedback during the development of educational content;
- provide insights and feedback on GEP communications campaigns; for example, our annual #GenomicsConversation week of action; and
- participate, on a voluntary basis, in recorded interviews, case studies and blog articles that tell patient stories.
