Researchers' experiences of patient & public involvement

Embedding patient and public involvement in research

Most researchers we talked to agreed that patient and public involvement has become much more established as a way of working over the last few years, but that there is still some way to go before it becomes truly embedded in research culture. People’s perceptions varied about how well rooted it is currently and at what level. Some argued that in their local team it was just ‘the way we do things here’, but the wider department or university might still not be fully on board. Through the interviews a picture emerged of a somewhat piecemeal approach to involvement. Some had found a very different culture when they moved job from one organisation to another, even within the same university. It was also pointed out that the expectation of involvement is better established within the NIHR (National Institute for Health Research) than some other funders – and even within NIHR there seemed to be varying degrees of interest from the different funding streams.
A few people such as Catherine felt it was not very embedded at all locally; she said, ‘I think I’m just doing it on my own really… I’m hoping people can be persuaded that it can actually be useful rather than just something we have to do, but just wait and see.’ People still came up against instances of indifference, tokenism or outright hostility (see ‘Colleagues’ attitudes to patient and public involvement’). People felt that it was important for senior staff to demonstrate their commitment to involvement. Some researchers acknowledged that involvement wasn’t always fully embedded in their own personal practice, let alone anyone else’s.
A common concern was that, although the NIHR, NIHR INVOLVE and Involving People in Wales have done a lot to promote involvement, there was a danger of duplication and fragmentation across lots of different parts of the NIHR, and a need for stronger leadership and training opportunities (see ‘Training needs for involvement’). At the same time, Sabi argued that we cannot leave everything to the NIHR. She and others identified the mismatch between academic career drivers and the principles of involvement as an underlying problem – ‘the ‘publish or perish’ culture, as Pam described it. These are amongst the issues raised in the recent ‘Breaking Boundaries’ review and the subsequent NIHR involvement strategy, ‘Going the Extra Mile’ (see ‘Resources’ section).  The strategy recognises the need for a whole-system change and approach, and that many of the problems and their solutions are to do with organisational culture.
Most researchers we talked to believed involvement was here to stay and would go from strength to strength, eventually becoming the ‘default setting’, but there was also a minority view that it was something of a fad that might eventually disappear, and some feared that it might not survive if its cost-effectiveness remains unproven.
Tom and Fiona expressed the view that the ultimate test will be how truly patient-led research is in future.

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