What is public involvement in research?
The National Institute for Health and Care Research (NIHR) defines public involvement as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.
In other words, this is when health and social care researchers and research organisations work in active partnership with members of the public so the public are involved in the conduct of the research. It is also sometimes called patient and public involvement and engagement or PPIE.
Why is public involvement important?
Involving people who have personal knowledge and experience of a research topic as a patient, service user or carer can help to 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, charities) as well as members of the public.
There is also said to be a moral obligation to involve the public in research because research is ultimately for them and because the public fund the majority of research.
In addition, public involvement is now expected by the NHS and most funding bodies in order to secure funding and gain ethical approval to run studies. Many research funders including the 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.
Public contributors have also said that providing public involvement is a rewarding and empowering experience as they have felt bonded with researchers and other public contributors by their shared goals.
How should members of the public be involved in research?
It is important to involve members of the public as early as possible in developing your funding application. Public involvement can be done at all stages of the research cycle. This might be by working with you to:
- shape and clarify the research question
- comment on your application
- identify relevant outcomes
- develop research materials and information that is clear and easy to read
- offer advice as a public member on your research advisory board
- identify practical issues that might affect recruitment
- carry out the research and interview participants
- suggest ways to share the findings of your research
Members of the public can take on more formal within research such as becoming co-applicants on your project.
“It was a dream process – a co-designed project – they came up with the idea, I refined it with them, they went to the RDS and did much of the legwork and we are now 2 years into the research.”