Public involvement

Public involvement

What is public involvement in research?

‘Public involvement’ is when members of the public are actively involved in research projects and in research organisations. INVOLVE defines public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.

When using the term ‘public’ we include patients, potential patients, carers and people who use health and social care services as well as people from organisations that represent people who use these services. Whilst all of us are actual, former or indeed potential users of health and social care services, there is an important distinction to be made between perspectives of the public and perspectives of people who have a professional role in health and social care services.

Why is public involvement important?

Involving people who have personal knowledge and lived experience of a research topic as a patient, service user or carer will strengthen and improve the quality of your research and make it more relevant. In some research projects you may need to consider involving wider stakeholders (e.g. practitioners, service providers, commissioners, voluntary services) as well as members of the public. There are many different ways that patients, carers and the public are able to work with you throughout the various stages of the research cycle.

It is important to involve members of the public as early as possible in developing your funding application and discuss with them what skills and experience they have and how they may wish to be involved. We offer advice and support at this early stage to help facilitate the process and introduce you to relevant people.  Many research funders including the National Institute for Health Research (NIHR) ask researchers to describe how they are going to involve members of the public in the different stages of their research. NIHR funding applications are reviewed by a range of experts which include patients, service users, carers and the public. The NIHR expects you to Involve the public from the outset and ensure that your research intention is clear for those outside your professional specialty who may be reviewing your application. It is really important to provide a good quality, plain English summary which we can advise you about.

Here are a couple of webinars which you may find helpful depending upon your level of experience in public involvement:

an introduction for researchers with little or no experience of PPI (email required to view) and the opportunities and challenges of PPI for experienced researchers.







Help researchers to ask the right questions

Are you unsure about how you could help with research? In any research project, the first step is thinking of questions that research could help to answer. It’s useful to have different perspectives on research questions, as a patient or carer might think about different things to a researcher.


For example, a carer working with researchers on a project about support for carers identified a group of ‘hidden’ carers that the researchers had not known about. The researchers had only been thinking about carers of people with a disability or people with mental health problems. The carer involved had looked after her husband when he had heart disease. She hadn’t identified herself as a carer at the time. Sharing her experience led to a new project to look at support services for this group.


Give researchers new ideas for research: