Learn more about PPI

• • What is public involvement in research? – From the NHS Health Research Authority
  • Guidance on engaging the public with your research – UK Research and Innovation’s policies and guidance on public engagement
  • Free PPI toolkit from Involving People (a Dorset-based service provider) – Includes a starter guide
  • Top tips for public and patient involvement and engagement in health research from The Academy of Medical Sciences
  • A guide on Patient and public involvement in Health and Safety Executive research explains what PPI is, what it involves, and gives suggestions about how to involve contributors in all parts of the research cycle and knowledge translation
  • Watch the NIHR Applied Research Collaboration West’s video on Working effectively with public contributors in research

Considerations before starting a project which would include PPIE

• • What questions should I consider when proposing a PPIE project? – This checklist is to aid researchers in planning PPIE work. It is designed to help researchers prepare for any sensitive issues that might arise when involving the patients and public in research, for example if discussion of a condition may trigger painful emotions. The checklist also helps you consider how to design your PPIE activities in a way that considers accessibility needs, as well as safeguarding and data protection frameworks.
  • NIHR guidance on The role of the public and patient involvement lead – NIHR research projects require a named PPI lead with dedicated responsibilities for leading the work with people and communities proposed as part of a research application or scheme. The lead role can be undertaken by a suitably experienced and named member of the team, including any co-applicant that has another role in the project/scheme. The lead must have the relevant skills, experience, access to resources and the agency to manage and embed working together with people and communities throughout all stages of the work.
  • What should I consider when appointing a PPI co-applicant? – NIHR Guidance on roles and responsibilities of a public co-applicant for researchers, and questions to consider when appointing a PPIE co-applicant
  • Patient and public involvement in research: a review of practical resources for young investigators – This paper published in BMC Rheumatology in 2023 explores the opportunities and challenges for young investigators involving PPIE in their research projects
  • NIHR Public involvement workforce career competencies framework – Outlines the skills and capabilities needed for roles in public involvement and suggests opportunities for development and progression
  • The Swiss Clinical Trial Organisation explains the concept of Patient and Public Involvement
  • The University of Oxford’s Medical Sciences Division has a website dedicated to PPIE, including resources

Ethics

• NHS Health Research Authority Public involvement guidance for researchers
• NHS Health Research Authority Research Ethics Service and Research Ethics Committees; includes a tool that will help you work out whether your project needs ethics approval, and you can print the answer as evidence
• NIHR Applied Research Collaboration North East and North Cumbria Ethical Practice Guidelines for Public Involvement and Community Engagement

Terms of Reference

• • View an example Terms of Reference developed by the NIHR Policy Research Unit – Behavioural and social sciences at Newcastle University
  • The PPI toolkit from Involving People includes a PPI governance checklist

Facilitation

• • NHS Facilitator’s Toolkit: Tools, techniques and tips  for effective facilitation
  • Watch the training video by the NIHR Applied Research Collaboration West on How to facilitate a patient and public involvement meeting

Emotions in PPI

• • Created in conjunction with the McPin Foundation, the Sensitive issues checklist is designed to help researchers prepare for any sensitive issues that might arise when involving the patients and public in research, for example if discussion of a condition may trigger painful emotions. The checklist also helps you consider how to design your PPIE activities in a way that considers accessibility needs, as well as safeguarding and data protection frameworks.
  • Researching emotionally sensitive subjects – A guide for researchers published by the UK Government
  • Webinar explores the role of emotions in public involvement in research – A national NIHR Applied Research Collaboration webinar to explore the complex role emotions play in public involvement in health and care research
  • Toward a trauma-informed qualitative research approach is a useful article to reflect on when researching emotionally sensitive subjects, and how to work with public contributors to successfully navigate this
  • The Researcher Wellbeing Project at the University of Bath explores the impacts of researching emotionally challenging topics and aims to establish what interventions researchers want for their wellbeing; the project has produced a set of resources – The Researcher Wellbeing Project (RWP): addressing researcher distress, trauma and secondary trauma
  • Look at the list of clinical supervisors who specialise in supporting researchers dealing with sensitive topics – (PDF) ‘Clinical supervisors’ / Independent Wellbeing Supervisors who specialise in vicarious / secondary trauma
  • Implementing a trauma-informed approach to research practice is a video produced by the Economic and Social Research Council Centre for Society and Mental Health at King’s College London

Imposter participants

• Guidance for recognising and addressing ineligible public involvement in health and care research – a joint publication from Health and Care Research Wales, the NIHR, and the Chief Scientist Office