Why involve patients and the public?

PPI 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 PPI is not incorporated into your work, you will have to give a clear explanation of why not.

It could benefit your research through:

• Additional expertise – this could come from having experience of the illness or simply relate to their age or demographic

• Ensuring the research questions are relevant and the priorities reflect the needs of those affected

• Improving patient experience and influencing trial recruitment and retention

• Assessing ethics/acceptability – helping ensure your research is conducted in a way that is sensitive to the needs and preferences of your participants

• Assisting with writing in lay language

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How could PPI help my research?

Patients and the public involved in your research could:

 

• Help write and design patient literature for your participants, so they are more suitable for the reader.

• Comment on ethical issues associated with studies, and how they can be addressed

• Ensure your study is appropriately designed

• Get advice on how to share your findings to a wide audience, in a way the public can understand

• Guide the design of questionnaires to get reliable, honest data from trial participants, particularly when questions are about sensitive topics

• Sit on your steering committee, to provide input based on their direct experience of the topic being investigated

 

Please see our Standard documents, templates and procedures to download the guidelines for researchers accessing any of the PPI groups and feedback form for PPI activities (for completion at the end of your PPI activity).​
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NIHR resource links below

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• Tips on writing a PLAIN ENGLISH SUMMARY

• Briefing notes for researchers - public involvement in NHS, health and social care research

• Payment guidance for researchers and professionals

• UK Standards for Public Involvement

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You can also search for advice and tips using the NIHR Learning for Involvement search page

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The NIHR has a series of PPI in Action ​Webinars which you can watch below

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Aimed at researchers and public members alike, each section gives a short introduction to all elements needed to be considered for good quality PCIEP, with additional resources available for those needing more detailed information. ​​​​​​

UK Standards for Public InvolvementProduced by the NIHR, this is a framework for what good public involvement in research looks like and designed to help researchers and organisations improve the quality and consistency of public involvement in health and care research. ​

 

Reaching Out: Building relationships to increase research impact

A report written about an online event where community groups, researchers and NIHR organisations from Kent, Surrey and Sussex came together to explore the barriers to ethnic minority group involvement in research and to consider what could be done to address these through partnership working.  

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Learning for Involvement  NIHR web pages offering Training and Resources for Public Involvement in Research.

If you have any queries please email the PCIEP Team ppiesupport@uhs.nhs.uk