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.
kristinastaley 
“every impact of involvement starts by changing what the researcher thinks” Can we really say this? Sometimes its about all parties reviewing and reflecting on their point of view through shared and open conversations where ideas, knowledge, opinions and experiences are exchanged between patients, carers, public and researchers.
Maybe we need to encourage more opportunities for those open and shared conversations to take place…ideally to talk, listen, and work towards commonly agreed goals?
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Yes – you’re right – perhaps I should change ‘every’ to ‘many’ !
Your comment makes me think of JLA partnerships where clinicians and patients discuss and agree priorities for research. What I like about their reports is that you get a real sense of the dialogue. You hear what priorities patients and clinicians started with, and often how both parties shifted when they heard each other’s views.
When I wrote this blog, I was thinking of reports of involvement in research design and delivery – where the impact is often described as if there is a thing called research that changed with involvement. I’m suggesting that actually there’s a similar dialogue going on and it’s people’s ideas and priorities that are changing…
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