Table 1 Application of NIHR UK Standards for Public Involvement in Research in AUKCAR

Inclusive opportunities:

Offer public involvement opportunities that are accessible and that reach people and groups according to research needs

Achieved

The research fellow keeps in touch with the Patient Advisory Group and advertises opportunities by email and social media.

We work on a first come first served basis; PPI colleagues choose what they want to be involved in, when and how.

Consider sharing information via radio or through leafleting/advertising in community spaces

Communications:

Use plain language for well-timed and relevant communications, as part of involvement plans and activities

Achieved

In conjunction with PPI colleagues, we produced “PPI request forms” for researchers seeking advice. This ensures requests contain all information PPI colleagues may want to know in order to commit to involvement in a project.

Develop a communication plan for involvement activities

Support and learning:

Offer and promote support and learning opportunities that build confidence and skills for public involvement in research

Partially achieved

We regularly provide opportunities (e.g. monthly meetings) for PPI colleagues to learn and contribute to AUKCAR ongoing research projects, explaining research methods and their implementation in lay language, building their skills and confidence in co-developing the AUKCAR research.

Provide online training on how to be involved for researchers and PPI colleagues. This is currently in production.

Working together:

Work together in a way that values all contributions, and that builds and sustains mutually respectful and productive relationships

Achieved

The AUKCAR PPI strategy was co-produced with PPI (available on our website).

The quarterly meetings, with the PPI Leads and PPI Research Fellow, provide opportunities to collaborate and develop research initiatives.

More training for researchers about PPI and available AUKCAR support, including training on ‘soft’ skills such as group facilitation

Governance:

Involve the public in research management, regulation, leadership and decision making

Achieved

We have four Patient Leads within AUKCAR who are grant-holders. and attend Centre Management Committee meetings

There is a need to identify external sources of funding to make AUKCAR PPI sustainable in the long-term.

Impact:

Seek improvement, by identifying and sharing the difference that public involvement makes to research

Achieved

Projects hold regular meetings with PPI colleagues to provide update on project status, gather feedback and show the impact that PPI contribution has had on the project. We deliver this in a format of “you said …, we did …”

Potential for annual survey of researchers and lay members to gather feedback on PPI.

We will be introducing quarterly newsletters for larger projects to keep members regularly engaged