Patient and Public Involvement and Engagement (PPIE) Resources

Working with patients and the public to shape, design and deliver research, and engage with it, is known as Patient and Public Involvement and Engagement, PPI or PPIE for short.

PPIE involves research “being carried out with or by members of the public, rather than to, about or for them.” We are strong advocates of this inclusive partnership approach throughout the research lifecycle, avoiding a ‘tick box’ approach.

Here are some key resources to help with using PPIE in your research:

• Supporting patient and public involvement in research

The National Institute for Health and Care Research (NIHR) has re-launched key resources and guidance that support patient and public involvement in health and social care research. The resources help patients and the public learn more about the benefits of involvement and how to get involved, and provides advice for researchers and professionals on involving people in their research projects.

• PPI checklist for researchers

This checklist was created by Miranda Van Emmenis and Lucy Lloyd (Primary Care Unit), Roberta Lovick and Phil Alsop (PPI representatives) at the University of Cambridge. This resource is for researchers to plan or evaluate their PPI activities in the context of the NIHR’s UK Standards for Involvement. It can be used at any stage of the research project, i.e. before, during and after PPI activities.

• UK Standards for Public Involvement

These standards were created by the NIHR, Chief Scientist Office (CSO) Scotland, Health and Care Research Wales, and the Public Health Agency Northern Ireland. The UK Standards for Public Involvement provide clear, concise statements of effective public involvement against which improvement can be assessed. The partnership also wants these standards to encourage approaches and behaviours that are the hallmark of good public involvement such as flexibility, sharing and learning and respect for each other.

• PIRRIST Guidance

This guidance is designed to help UK-based Chief Investigators (CIs) of trials to plan effective PPI to enhance the recruitment and retention of trial participants. The core guidance is only 4 pages long, with additional appendices and external hyperlinks for further information.

• ARC resources to support public involvement in research

This collection for researchers, non-researchers and public contributors was put together by the NIHR Applied Research Collaboration South London.

• Editorial on patient and public involvement in general practice research

Written by Ben Bowers, Roberta Lovick, Kristian Pollock and Stephen Barclay. This editorial makes the case that meaningful PPI makes a positive contribution, but the nature and content of PPI work need to be transparent and appropriate.

• The impact of public involvement in health research: what are we measuring? Why are we measuring it? Should we stop measuring it? 

Written by Jill Russell, Nina Fudge and Trisha Greenhalgh. This paper looks at what effect the focus on demonstrating the impact of public involvement is having on rationales for doing PI in the first place and how PI is done.

• Involving patients and the public in research: learning report

Written by Sonja Marjanovic, Amelia Harshfield, Asha Carpenter, Adam Bertscher, Daniel Punch and Sarah Ball. This learning report aims to build a better understanding of the role of PPI in research, thereby helping ensure meaningful involvement that has tangible impacts and mitigate against undesired consequences.