Table 1 Overview of the involvement groups

Peninsula Childhood Disability Research Unit (PenCRU) Family Faculty

PenCRU is a research unit focusing on childhood neurodisability. PenCRU is a partnership between researchers, families and health professionals. Staff includes researchers, a Family Involvement Coordinator and an administrator. Parent carers are members of the PenCRU Family Faculty, which currently has over 200 contacts. Parent carers are involved in all aspects of the research cycle. For substantive projects ‘working groups’ are convened whereby parents participate in meetings and/or input research via email and telephone. Membership of the Family Faculty does not commit members beyond receiving emails about PenCRU activities and opportunities to get involved.

Adviser Forum to the CLAHRC^a North West Coast (NWC)

There are more than 100 members of the Adviser Forum who are involved in a CLAHRC NWC study or implementation activity. Public advisers also hold positions on the CLAHRC NWC steering board, management group and the committee that approves funding for new studies. Each CLAHRC NWC research study consists of three partners; A University (Lancaster, Liverpool or Central Lancashire) partner, a partner from a local authority or the NHS, and community members. There is one full-time public engagement facilitator and a part-time assistant to support the group.

Peninsula Public Involvement Group (PenPIG) for CLAHRC South West Peninsula (PenCLAHRC)

PenPIG is a public advisory group, or ‘critical friend’, for PenCLAHRC, which is a partnership of local NHS Trusts across Somerset, Devon and Cornwall, plus the Universities of Exeter and Plymouth. The group has representation on PenCLAHRC’s Management Board, and members are involved in research prioritisation, research funding applications, on-going research and dissemination. Three researchers and one administrator support PenPIG members with their involvement in research. This team also helps researchers convene patient-specific groups beyond PenPIG.