Chair of Participant Panel

Overall purpose of the Chair of Participant Panel:

To lead, support and work with other members of the Participant Panel at Genomics England. This includes developing Panel strategy and membership alongside the Vice-Chairs, and with support from Genomics England. The Chair plays a significant role in ensuring that participants’ voices are not only heard but embedded into Genomics England’s work – and further afield where possible. The Chair of the Participant Panel is an influential, key spokesperson and is expected to champion the Panel’s activities and make connections with relevant stakeholders and networks in the genomics, health, and care sectors.

Genomics England understands the very nature of being a Panel member means that there may sometimes be personal commitments that need to be prioritised. In such circumstances, the Chair and Vice-Chairs may share their responsibilities on a temporary basis, by agreement.

Key responsibilities:

• Chair quarterly Participant Panel meetings: set agenda, coordinate speakers, agree timings, and follow-up actions.
• Correspond with Panel members and provide feedback to Genomics England staff where appropriate.
• Participate in quarterly National Genomics Board and NHS GMS People and Communities Forum meetings.
• Meet with Genomics England’s CEO on a monthly basis and co-chair monthly meetings with the Communications & Engagement team to set agenda and follow up on any actions.
• Present participant viewpoints at conferences and promote the Panel’s work.
• Collaborate with the Panel to write position papers.
• Stay current by reading relevant policy and consultation documents on health data and genomics and attending webinars.
• Attend relevant conferences and training events.
• Interview potential new Panel members and senior Genomics England staff.
• Attend ad hoc meetings with Genomics England staff.
• Share responsibilities with Vice-Chairs, including possible membership of the Access Review Committee as appropriate/by agreement.

Requirements

Whilst we welcome any suitable qualifications, we are looking for the following list of experience:

• Lived experience with a rare condition or cancer and have consented to share own or a loved one’s data for research purposes in the National Genomic Research Library.
• Commitment to amplifying patient and carer voices.
• Experience in advocating for patients or research participants at a local, regional, or national level is strongly desirable.
• Demonstrable experience in supporting others, such as peers, colleagues or own team.
• Strong project management and organisational skills.
• Demonstrated interest in and understanding of healthcare and the NHS.
• Experience in chairing meetings and effectively representing research participant, patient, and/or carer views.
• Passion for patient and carer involvement in healthcare and research
• Excellent communication skills, with the ability to articulate views clearly and engage with diverse perspectives.
• Strong commitment to promoting principles of equality, diversity, and inclusion.