… all down to luck?
If there aren’t methods for involvement and a representative sample of patients/ public isn’t required (see Staley & Barron 2019), then it could all start to look a bit uncontrolled for your average researcher. They might be concerned that the outcome of involvement is purely due to chance – something researchers would be very worried about in relation to their results. But involvement is not research, so somehow researchers need to feel more confident and relaxed about the fact that the impact of involvement is often unpredictable and uncertain.
Perhaps it would help to remember the words of wisdom from a researcher who was forced to embrace serendipity – Louis Pasteur. He of ‘oops I accidentally discovered penicillin’ fame, once said:
“Chance favours the prepared mind.” Louis Pasteur
I was reminded of this quote when I read a story about how a group of dementia researchers developed a totally new research project, based on a chance comment made by a family member at a support group meeting. The group was for people affected by a rare form of dementia, where the part of the brain that deals with vision is most affected. One member of the group was telling a story about how their mother-in-law had recently asked them ‘Am I the right way up?’ because she wasn’t sure. This was news to the researcher because previously this form of dementia had only been shown to affect vision, and not balance. On finding out that other group members had had similar experiences, the researchers embarked on a whole new project, with extensive carer and patient involvement, to explore how balance is affected – something they would never have otherwise thought to do.
This example very nicely shows how sometimes the impact of involvement is down to luck – but there’s an awful lot researchers can do to ensure that luck is on their side. One thing I noticed was that these researchers had organised a support group, and were having regular conversations with patients and carers, not necessarily about research. This would no doubt increase their chances of learning something new, and enhance their understanding of patients’ and carers’ concerns.
Then there’s Louis’s point about having a prepared mind. Researchers need to approach involvement with an open mind, to be prepared to learn, perhaps when they least expect it, and perhaps in contrast to their preconceived ideas of what they’re likely to learn. Another researcher in dementia, Georgina Charlesworth, made a similar point when she commented, “In working with people with dementia and their carers… it has been a delight to hear the ideas generated often as ‘throw away’ remarks and ‘asides’ during discussion or tea-break conversations”.
This might be worth considering when supporting and training researchers prior to involvement. Maybe it’s less about ‘how to do it’, and more about ‘how best to prepare researchers’ minds’.
2 thoughts on “Is the impact of involvement…”
Is involvement not research? I think its imp that is is viewed as a research activity like ethical review is part of the research process. It doesn’t need to be stuck in a rigid framework of “do it this way”, the complexity of involvement is part of the challenge and reward of working in this way. Every project requires a different approach but that doesn’t mean it’s not an integral part of the research process. It is research like data cleaning or an analysis workshop, all add value and are part of the research study. I am interested in what involvement in research is, if it’s not research. Good to discuss!
Hmm interesting challenge! I’d define research as something like ‘a systematic investigation undertaken to increase the stock of knowledge, using a research method’. Involvement can sometimes mean that patients/ the public do the research by carrying out aspects of the systematic investigation. But not always…
When I was a researcher I spent a lot of time talking to my team mates, very often in the pub a Friday night! They helped develop my thinking and informed my plans and so influenced the doing of my research – is that part of the research process?! Part of research activity? The difference for me is that those conversations changed my ideas, they didn’t contribute to the stock of knowledge. That’s how I’m thinking involvement is different to research… often the impact is on the researchers’ thinking and plans…
I’d say involvement is a process of experiential learning, the knowledge gained is subjective, highly context and individually specific – in contrast research produces generalisable, objective data. So it relies on a different kind of knowledge (patients’ experiential knowledge) and also generates a different kind of knowledge…
Bec, Derek and Rosemary Barber and I are tackling this issue in thinking about what’s the difference between involvement and qualitative research – so will come back to this one…