Researchers' experiences of patient & public involvement

Messages to the NHS, universities and research funders about patient and public involvement

As we discuss elsewhere (‘Organisational support and leadership for patient and public involvement’ and ‘Embedding patient and public involvement in research’), researchers talked about organisational and policy drivers in favour of involvement. Here we summarise messages researchers wanted to get across to a range of organisations, including the NHS, research funders and universities.

The NHS National Institute for Health Research was felt to be a major driving force in favour of involvement, and one which other research funders could learn from. In Wales, Involving People was also felt to have played an important role. However, researchers felt there was still a long way to go in ensuring that all grant applications are written with patient and public input at the early stages and include meaningful plans for continued involvement throughout the study, and that sufficient funding for involvement plans is seen as a legitimate part of any bid (see also ‘Embedding patient and public involvement in research’). The role of universities in supporting infrastructure and the problems of short-term funding and short-term contracts were also raised (see also ‘Organisational support and leadership for patient and public involvement’).
Alice and Catherine worried about how funders judge grant applications and how they assess whether involvement plans are appropriate.
There was some discussion of the ‘impact’ agenda – whereby university research outputs are now judged partly on their impact as well as their research quality, for the Research Excellence Framework or REF. (Impact for REF was defined by the Higher Education Funding Council for England as ‘an effect on, change or benefit to the economy, society, culture, public policy or services, health, the environment or quality of life, beyond academia’). While Stuart thought this focus on the wider usefulness of research would encourage universities to be positive about patient involvement, Sergio was concerned that universities and funders should not take too narrow a view of what is ‘useful’.
Various ideas for better support were put forward, including guidance on best practice, realistic funding mechanisms that allow for the implementation of PPI even before a grant application has been awarded, and training to encourage researchers to think more broadly about PPI.
Both Suzanne and Vanessa argued for more national coordination and leadership. Suzanne commented: ‘It's fragmented and there's not a lot of joined-up-ness around it at all’. People are aware of pockets of good practice, ‘but actually if that person leaves where does it go? Probably disappears.’
The NIHR has recently published a strategic review of research involvement ‘Going the Extra Mile’ which addresses some of these issues, and recognises the need for a whole-system approach (see Resources). 

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