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PUBLIC AND PATIENT INVOLVEMENT AND ENGAGEMENT (PPIE)

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Our strategic aim is to increase our research’s relevance, quality and reach by embedding PPIE throughout activities, from how projects are first identified, to how they are planned, run and results shared, ensuring that PPIEP contributors are equal partners, including as agents for change.

Our approach follows UK standards for public involvement:

Governance

• Accountability held by PPIEP lead, supported by the Project Manager. Management Committee member.
• Supported by three Co-Leads who are patients/members of the public.
• Together these form the Core PPIEP committee (Chair: PPIEP Lead).
• Bi-monthly meetings (plus ad hoc meetings as required), all offered during day/evenings, online/face-to-face to support individual’s needs.

Working Together

Core PPIEP committee will consider and triage all requests for PPIEP input; those requiring additional input will be identified and their ideal characteristics (age, gender, ethnicity etc) defined before constituting a bespoke PPIEP group.

Each PPIEP group will work with the Project Lead(s) to develop research plans; contributors can volunteer at various levels throughout each project; e.g., reviewing all patient-facing materials, contributing to results interpretation and dissemination plans, including reviewing lay summaries of findings for websites/blogs, and identifying future research directions.

Impact

We will:
• Use existing PPI reporting tools to log impact of lay contributors on changes to research design, results, dissemination.
• Reflect on potential power imbalance between researchers and lay contributors and correct as required.
• Disseminate findings to everyone who may find them relevant, useful or interesting.

Communications

We will:
• Use our engagement and digital activities (e.g., Zooniverse) to inform and widen participation.
• Maintain a dedicated website with social media platforms presenting information for the community.
• Provide lay summaries of findings in plain English for websites and press offices.