Who should I involve in my research and why? Patients, carers or the public?

Abstract

Plain English summary Patient and public involvement in research helps to make it more relevant and useful to the end-users. Researchers are therefore keen to involve people but are sometimes uncertain about who to involve. Some confusion comes from the terms used. The UK’s term ‘patient and public involvement’ suggests there is only one activity and that both inputs are needed or either will do. The terms ‘patient’, ‘carer’ and ‘public’ are not used in the same way by everyone. Involvement happens in many different situations, influencing different kinds of decisions, which then determines whose input will be most valuable. Being clear about the ‘why’ can help answer the ‘who’ question. However, not all researchers are clear about the purpose of involvement. When learning is understood to be the purpose, the most appropriate people to involve are those with relevant experiential knowledge. They provide insights based on their lived experience. In research projects, this is experience of the topic being studied. This could be patients, carers, public or health professionals. We discuss how involving people who do not have relevant experiential knowledge may limit impact. These people may be as likely as researchers to make wrong assumptions. This risks missing key insights or making unhelpful decisions. We conclude that greater attention should be given to the question of who to involve. Raising awareness of the importance of relevant experiential knowledge and other factors that determine whose input will be most useful, will help maximise opportunities for learning and increase the potential for impact.

Keywords

• Patient public involvement