Getting started

What is Public Involvement and Engagement? 

Public involvement is an active partnership between researchers/ people who work for research organisations and the public, patients, service users and carers who influences and guide research. We define public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. Public involvement as defined here is also sometimes referred to as patient and public involvement (PPI).

Public engagement is crucial to public involvement. It raises awareness of research, its importance and its value by sharing high-quality and accessible information and knowledge, including how people can find out more about taking part.

Examples of engagement are:

• science festivals open to the public with debates and discussions on research

• open days at a research centre where members of the public are invited to find out about research, raising awareness of research through media such as television programmes, newspapers and social media, and

• sharing research findings of a study with participants, colleagues or members of the public

Who is a public partner? 

Public partner is a term to collectively describe patients, service users, carers and wider members of the public. Public partners work together with researchers and healthcare professionals to create, shape and co-produce a variety of health and care research outputs. The term public partner represents all of the components of PPIE; "involvement", "engagement" and "participation".  Public partners can also be known as: 

• Public contributors 

• PPI or PPIE representatives

• Patients/carers

• Patient advocates 

• Research Champions 

For the purpose of this toolkit, we will use the term public partner to define all of the above terms.  There are a number of ways that the public can be engaged and involved in health and care research. Please take a look at this guide from the NIHR - Public Partnerships. 

Basic training and guidance for public partners 

Public Partnerships Induction  This module is for members of the public who want to understand more about the role of public partners and how we, the National Institute of Health and Care Research (NIHR), approach public partnerships. It will be of particular interest to new public partners (adults).

Starting Out - This guide has been written to help and advise members of the public who would like to get involved or have recently become involved in health and care research. 

Methods of involvement  

In the section Public Involvement Checklists, you can find a list of traditional public involvement activities. These include: 

• Online/ in-person public advisory groups- bring together members of the public to meet regularly and inform your work

• Representatives sitting on programme boards/ strategic groups- members of the public sitting on existing boards/ groups and advising from a public perspective

• Online/ in-person focus groups - a discussion group used to collect opinions and feedback from a group of people about a specific product, concept, or service

• Public partners co-delivering training or speaking at events 

• Review of documentation to ensure it is suitable for a lay audience - either through email feedback or feedback through a focus group 

Co-design and Co-production

Co-design is a method of involvement in the designing of services or a project. It is about finding the best solution together with people; not necessarily making something new. 

Co-production is an approach to involvement that encourages shared decision-making from the outset of the project. Partners work together in an equal, reciprocal and trustworthy way. 

Building trustworthiness, trust, mutual benefit and respect and an equal power dynamic between professionals and Public Partners is at the heart of co-production and co-design. 

The NIHR has produced guidance on co-producing a research project. If you are interested in exploring co-production and/or co-design for your activity, the RDN CC PPIE Team will be happy to provide you with more information and signpost examples.  

Further resources

There are a number of toolkits that contain wider information and resources to support you in involving the public in your work:

• NIHR Learning for Involvement - Training and resources for public involvement in research. 

• The Generation R Alliance/eYPAGnet Toolkit will help you set up and run a Young Persons Advisory Group, allowing the voices of children and young people to be heard in research.

• VOICE - The platform run by the UK’s National Innovation Centre for Ageing has a free online PPI planning tool to help you think through the design of your PPIE activities.

• The NIHR UCLH Biomedical Research Centre hosts a series of Introductory PPI training courses free to staff from UCLH and UCL-affiliated organisations. 

• Co-production Network for Wales Knowledge Base provides a toolkit to support you step-by-step on your co-production journey (external to NIHR). 

• Patient and Public Involvement and Engagement Planner:  An online tool to plan your Patient and Public Involvement and Engagement activities in alignment with the UK Standards for Public Involvement developed by NIHR Newcastle Biomedical Research Centre.