A patient and public involvement (PPI) member is someone who uses personal, professional or community experience – such as being a patient, carer or member of the public – to help shape research and health and care priorities.

PPI members provide unique insights, act as lay advisors and build valuable connections with wider communities and networks. While their role is vital, it can also feel daunting at first. 

Three women sit at table having a discussion in a patient and public involvement group

To address this, six PPI members with diverse lived experience recently came together to share ideas and feedback for the further development of a PPI Members Handbook. This resource is being created by the Cicely Saunders Institute and the Nursing, Midwifery and Palliative Care Faculty Inclusive Research and Education Practices Project.

Alongside feedback aligned with the UK Standards for Public Involvement, participants raised a new and innovative idea during the discussion: introducing a staged induction process for new members. The aim is to ensure new members feel supported, guided and confident when joining a PPI community or research project

Dr Sarah Crabtree, public involvement coordinator at the Cicely Saunders Institute

Stage 1

  • Initial introductory call with the PPI key contact, with the option of an in-person visit if feasible
  • A short questionnaire (or similar) to learn about members’ interests and reasons for joining


Stage 2

  • Opportunities to explore PPI websites from the faculty and/or institute
  • Introductory training, such as ‘What is research?’
  • Access to resources and support available for public members
     

Stage 3: Handbook

  • Clear contact details and communication guidance
  • A glossary of acronyms
  • Guidance on joining specific research projects, not only the broader PPI community
  • Practical advice on meetings, including how-to guides for Zoom/Teams, speaking strategies, etiquette, and access to a designated tech assistant
  • A map of all PPI activities within the Institute

When discussing the handbook itself, members recommended organising the content into clear sections, each beginning with a ‘what to expect’ checklist and ending with a summary. They also suggested making it visually appealing with colourful images, diagrams and, if online, animations.

Sarah Crabtree

A draft induction process and handbook have now been created and is being further developed with other PPI communities across King’s College London, with the goal of creating a welcoming community and process that can be used consistently by all PPI members involved in university research.

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