NIHR Biomedical Research Centre: Southampton
Patient and Public Involvement
and Engagement (PPIE)
Patient and Public Involvement and Engagement (PPIE) is where members of the public are actively involved in research projects and research organisations. It is also known as Community Engagement and Involvement (CEI).
These activities recognise that people with lived experiences contribute additional expertise and give valuable, novel insights. The NIHR defines public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.
Our PPIE team provides free support and advice for staff looking to involve patients and the public in their research.
In addition, they provide access to:
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Mailing list of adults interested in contributing to PPIE activities (over 600 members)
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Under-represented groups and communities through our community engagement activities
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Please contact ppiesupport@uhs.nhs.uk to get in touch with the PPIE team and discuss your requirements.
Why involve patients and the public?
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Involving people could benefit your research through:
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Providing a lay perspective – spot things that as a researcher you may not have considered
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Additional expertise – the knowledge and experience of having an illness or condition, through caring for a family member or friend, or having a specific characteristic
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Ensuring the research questions are relevant and the priorities reflect the needs of those affected
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Improving patient experience and influencing trial recruitment and retention
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Assessing ethics/acceptability – helping ensure your research is conducted in a way that is sensitive to the needs and preferences of your participants
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PPIE in research is expected for many funding streams (including the NIHR) and is a consideration made by the National Research Ethics Service when assessing applications. If PPIE is not incorporated into your work, you will have to give a clear explanation of why not.
How could PPIE help my research?
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Patients and the public involved in your research could:
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Help write and design patient literature for your participants, so they are more suitable for the reader.
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Comment on ethical issues associated with studies, and how they can be addressed
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Ensure your study is appropriately designed
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Get advice on how to share your findings to a wide audience, in a way the public can understand
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Guide the design of questionnaires to get reliable, honest data from trial participants, particularly when questions are about sensitive topics
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Sit on your steering committee, to provide input based on their direct experience of the topic being investigated
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Additional resources
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NIHR Research Support Service - offers free, expert advice and support to applied health, public health and social care researchers on the design and delivery of research and the development of research funding applications
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UK Standards for Public Involvement - provide a framework for researchers, showing them what good involvement looks like
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Reporting PPI in publications guidance – NIHR recommendations, including a reporting checklist
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NIHR UK Standards for Public Involvement – provides a clear framework for planning and delivering high-quality PPIE.
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NIHR guidance from INCLUDE project – supporting inclusion of underserved groups in research
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NIHR Biomedical Research Centre: Newcastle PPIE resources for researchers
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Raising Voices in Research - increasing diversity in research participation