Researchers' experiences of patient & public involvement

Doubts, worries and debates about involvement

There are many psychological and organisational theories about the factors which affect whether people adopt new practices. A common component of these theories is the extent to which people believe that a new practice is justified, that a good case has been made, that it will bring benefit, and that the costs of doing it will not outweigh the benefit. 

While our interviews covered many positive reasons for and experiences of involving patients and the public in research, researchers also raised a wide range of doubts and concerns, both their own and those of their colleagues. Some people gave permission for their interview to be used in written form only, often reflecting a worry that being seen to be too critical about involvement might be damaging for their careers. A few withdrew their interview from the study, and of course others with more sceptical views may have chosen not to take part at all. Even among those with more broadly positive views, it was seen as important to be able to discuss doubts and problems and not overstate the value or appropriateness of involvement. But this could feel difficult or risky. There was a sense that both the duty to involve people and also the methods of involvement were being imposed. As Marian commented, ‘The elephant in the room is the being told “you must” - and the being told “you must do it this way”.’
Many of the concerns and debates raised are considered in greater detail elsewhere, and they include:
Additional concerns included the potential burden on patients and how far good use was being made of their time and enthusiasm. Linked to this was the continuing worry that approaches to involvement still too often revert to a tick-box or tokenistic approach, involving people too late or too superficially; as Sabi and Andy suggested being unclear about what to do and not really believing it will work are likely to make lack of impact a ‘self-fulfilling prophecy’. At the same time, some researchers expressed doubts about the value for money of involvement, and dealing with irrelevant input, including from people perceived to have ‘an axe to grind’ or a single agenda.
In ‘Feelings about involvement and emotional impact’ and ‘Colleagues’ attitudes to patient and public involvement’, researchers’ ambivalence about involvement is explored further, including worries about losing control and feeling upset at any assumption that they are unfeeling or thoughtless. A common theme was finding a balance where both parties were involved, but recognising researchers’ need to ensure the quality of their research and retain ultimate responsibility. Felix argued that researchers ‘uphold a pretence of real equality and partnership and fairness… but it's an inherently imbalanced relationship.’ Anne was concerned about moving too far towards a position of ‘patients running the shop’, and David (see earlier) commented on ‘the pendulum swinging too far’. Many researchers we talked to could see these concerns in their colleagues, even if they themselves were not so worried.
Some researchers expressed concern about possible negative as well as positive impacts from involvement, and about the difficulties of recording or discussing these; the pressure is to demonstrate positive impact. However, Narinder thought problems could be avoided by explaining from the outset that some suggestions may not be taken up, and explaining why. Andy also highlighted the need to be open about the fact that involvement sometimes just does not go well or have positive outcomes.
Finally concerns were raised about the level of duplication (both locally and nationally), the need for greater leadership and the level of bureaucratic burden involved. (See also ‘Organisational support and leadership for patient and public involvement’). At local level, one related debate is whether involvement should be ‘everyone’s business’ or whether specialised coordinators are an essential support. Andy recognised that some people were critical that ‘what’s emerged is a PPI profession… this new layer of bureaucracy called the PPI industry and a whole layer of PPI people’, although he personally had come to see it as a necessary development. Vanessa argued that involvement was now ‘a specialism, and specialisms need leadership and they need training and they need support.’ Sabi argued for greater continuity and exchange between PPI in research and PPI in service development, rather than treating these as entirely separate.

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