The researchers’ experience
Involvement in research is essentially a conversation*. It’s about one group of people talking with another group of people – clinicians/ researchers/ research staff talking with patients/ carers/ members of the public. Through their conversation, they share ideas, knowledge, opinions and experiences.
So when it comes down to it, the impacts of involvement often start by changing what the researcher thinks. I’ve heard researchers describe this as a ‘light-bulb moment’. This causes them to act differently, do differently and/ or communicate differently – which ultimately has an impact on the research those people do.
The impact of involvement then always depends on where the researcher starts out – what assumptions, skills, values and knowledge they bring to the table. If the researcher starts with the wrong assumptions about what matters to patients, then talking to patients will give them very different ideas about what questions need to be asked, or what outcomes need to be measured. If the researcher is pretty good at writing in plain English, then involving patients in reviewing their patient information might not make much difference to how easy it is to understand.
The final outcome will also depend on what the researchers experience and do in response – what they hear, learn and value from the conversation, and ultimately what changes they decide to make. The main impact of involvement is therefore on researchers – but we rarely talk about that. We talk about impacts on the research as if it’s separate from the people doing it. Maybe we need to hear more about the researchers’ experiences to gain a deeper understanding of how involvement works?
*except perhaps in the context where patients carry out the research themselves.