A group of eight individuals with lived experience was recruited to the project. They represent diversity in terms of condition type, whether they are affected or a parent/carer, their level of experience with research, and demographic characteristics.
During the period:
- An initial meeting for the PPIE advisory group and the leads of work package (WP) 1, 4 and 5 was held to introduce the group to the project (December 2023).
- Terms of reference for the group were agreed following the initial meeting.
- Individual WP-specific meetings were then held in February (WP1 and WP5) and March (WP4) 2024.
- WP1 meeting: discussion points included the following themes, and ARDAT’s potential roles: communication and sources of information for patients about gene therapies; trust and building relationships. Specific feedback on the ARDAT website was also provided. The ARDAT team updated the website in response and fed back to the PPIE advisory group.
- WP5 meeting: communication around regulation was discussed and the need for patient input to the planned 2025 HTA workshop. Specific feedback on the patient flyer was provided by the advisory group.
- WP4 meeting: discussion points included the processes that individuals must go through when providing samples; wording to improve recruitment of ‘healthy volunteers’; consent/assent for children. Specific feedback on the template participant information sheet and consent form was provided by the advisory group. The WP4 leads also indicated that members of the group could join the Data and Sample Access Committee when it is established.
For more PPIE information or ways to get involved please contact:
Amy Hunter, Director of Research at Genetic Alliance UK, amy@geneticalliance.org.uk
Rachel Waller, ARDAT Project Manager, r.waller@sheffield.ac.uk