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What is public involvement in research?

Many people describe public involvement in research as research that is done with or by the public and not to, about or for them.

Public involvement in research is what happens when members of the public get actively involved in research, such as helping to decide what is researched, how the research should be carried out and what should be done afterwards.

This active involvement is different to being a participant in research such as taking part in a clinical trial.

When we talk about members of the public this phrase describes a broad range of individuals and groups and includes patients, carers, people who use health and social care services and organisations that represent people who use services. 

A growing number of organisations have opportunities for public involvement in their research activities. For example, they could be looking for people with personal knowledge of an illness that they want to research or for members of the public with some previous experience of involvement in research.

And you can use this website to find opportunities to get involved.

An expert's view

In this short clip, Alison describes what public involvement means and gives some examples of how members of the public can get involved in research.

Transcript 

"I think public involvement in research is something that's sometimes quite difficult to explain.  Quite often people, I think, imagine it's getting involved in research as a participant, being interviewed in somebody else's research project. 

What we're talking about here is people getting involved in the actual research process themselves.  Getting involved in doing research, maybe alongside academic researchers.

So perhaps getting involved in interviewing people yourself, so getting some training and interviewing skills can be a part of that, or at getting involved in helping people to think about planning the research in the beginning and to think about what questions might best be asked of people in particular circumstances.

I can think of a couple of examples where people have got involved. One of the things that I do in particular is train people in interviewing skills, and I've seen people go out and interview others and come back and say how much and what a big difference it made to them, but also to the people they were interviewing.  The fact that they had something in common.

We're not saying that people go out and interview people and tell them about themselves, but that they have something in common can often make a huge difference to the research participant. 

So we're talking about something that means people getting involved in doing the research, whether it's asking the questions, designing a topic guide, designing a questionnaire, actually interviewing, actually analysing that data, getting involved perhaps in writing reports.  Although I would have to say that everybody's worst section of a research project is probably writing the reports.

But also another area that people can get involved in is disseminating.  Making sure that the findings of the research get out to the people who matter, and that can often mean talking to your own group, your own local user group, or a patient group or an organisation that you've been involved in.  Telling them the findings of the research in a really accessible way, helping the researchers to get the findings out to a wider audience". 

For more information about public involvement in research you can read INVOLVE's Public Information Pack.

Page last edited: 08 July 2011