Researchers' experiences of patient & public involvement

Messages to researchers/colleagues about patient and public involvement

We asked researchers what their messages would be for other research colleagues, both those already working to involve people, and those who are sceptical or have yet to try it.

The most common message was that it was worth trying and could make a positive difference to your work. Several researchers wanted to encourage their colleagues not to worry too much and just give it a go. Comments included:

‘Try it and see - and it will work, and you'll wonder why you never did it before.’ (Jim)

‘Give it a go. You’ll just be surprised at how beneficial it is and how much great stuff will come out of involving patients and members of the public.’ (Jo)

‘Don’t see it as being a tick box exercise and don’t worry if you don’t get it right the first time, but do it.’ (Ceri)

Like Ceri, several researchers said they would encourage other researchers to try, even if they make some mistakes along the way, rather than not to try at all. They said there was a lot of help and support available - including from patients themselves - and that learning from the experience of other researchers was one of the best ways to find out more about it.
A few people pointed out that involving people was increasingly required for grant applications, so one might as well just accept that and get on with it. Narinder, for example, said it was ‘here to stay’ but could be a benefit as well as a requirement, and Tom emphasised, ‘it’s not as hard as it seems.’
At the same time, other researchers were concerned that their colleagues should take it seriously and should not expect it to be easy. Felix was thoroughly in favour of researchers working with the patients and public but his message to them was to either take it seriously or ‘please don’t do it’. However, others were concerned people should not be put off by worrying that they needed to be perfect. Being clear about why you are doing it and what you expect to gain were felt to be important.
There were also concerns about how appropriate involvement was for all settings and types of research. Some researchers were unhappy that it was being pushed on them inappropriately, although Bernadette suggested this was sometimes the only way to achieve a change in culture. (See also ‘Doubts, worries and debates about involvement’).
Several researchers reflected on the issues of power, organisational culture and behaviour change which need to be addressed. There was a common view that researchers who have themselves discovered the value of involvement first-hand have an important role to play in sharing their experiences with colleagues. (See also ‘Learning from experience of involving patients and public’).
We leave the last word to Marian and Gail on how rewarding involvement can be.


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