Researchers' experiences of patient & public involvement

Colleagues’ attitudes to patient and public involvement

We asked researchers what they felt their colleagues’ attitudes might be towards involvement, both locally and more broadly within their profession or within research. We were interested to know how this affected researchers’ confidence and enthusiasm. Researchers’ experiences ranged from feeling well supported to involve patients and the public in an enthusiastic team through to feeling isolated and dismissed – and everything in between. Not surprisingly, those with enthusiastic colleagues found this environment very helpful, particularly if principal investigators demonstrated their support, even if it didn’t solve all problems. Felix suggested a generational change was underway.
At the same time, some researchers described colleagues who appeared actively hostile, sceptical and dismissive about involvement, and some who were just not interested or were unaware. This might depend partly on their academic discipline and how theoretical or lab-based their work was.
As some of the extracts above suggest, researchers could see a range of reasons why their colleagues (and indeed sometimes they themselves) might be sceptical about involvement. These included wanting to stay in control and maintain power; concerns that patient involvement might threaten the scientific rigour of their research; worries about hearing only a few ‘unrepresentative’ perspectives; feeling that patients would just make irrelevant remarks; and the time and effort involved.
As Bernadette suggested above, occasionally people may feel the career incentives for academic CVs (such as the need to publish in high impact journals and attract prestigious funding grants) are in conflict with good involvement. Several researchers noted that it is often seen as something for junior staff to do.
For some people who had come into research from other backgrounds to work as PPI coordinators, academic culture seemed very alien and intimidating. Pam argued that it’s researchers that can be hard to reach, not patients.
Researchers we talked to identified many other emotional and practical factors behind colleagues’ reluctance to involve patients. Andy suggested it was important to be sensitive to people’s worries and concerns and understand where they’re coming from. Several people suggested they themselves and colleagues might be afraid of or anxious about involvement; uncertain how to get started; lacking in confidence and people skills; and uncomfortable doing it in practice (see also ‘Training needs for involvement’). Suzanne (see above) commented that the research world ‘attracts perfectionists’ who may struggle with doing something they feel is beyond their expertise. Researchers used words such as ‘daunting’, ‘threatening’ and ‘frightening’ to explain both their own and colleagues feelings (see also ‘Feelings about involvement and emotional impact’).
Informal networks with colleagues could help overcome some of these worries, by enabling researchers to share their experiences and challenges. As Chris said, ‘Even kettle conversations whilst making a cup of tea… It would be much more difficult if you were on your own doing this without a supportive community of people’. 

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