Researchers' experiences of patient & public involvement

A long-running debate is whether people who get involved in research long term lose their fresh ‘outsider’ perspective and become too ‘professionalised’. The worry is that people get so used to the research environment and research jargon that they lose their distance and ability to challenge, and may become too cosy with researchers. But it can also be argued that people who get involved longer term become more effective at challenging, because they gain knowledge, confidence and skills. This is closely linked to the question of providing training for people who get involved (see ‘Training needs for involvement’).

We asked researchers what they thought about this topic. In the accounts of those researchers who were most worried about professionalisation, words such as ‘tamed’, ‘acculturated’, ‘socialised’, ‘schooled’, ‘tainted’, ‘going native’, ‘usual suspect’ and ‘loss of authenticity’ were used to describe the problem. One person talked about some families who get involved in their research becoming ‘expert families’ and commented that ‘I was going to call them “repeat offenders”.’

Many could see both sides of the argument and did not feel there was a simple answer. There was disagreement about whether becoming a service user/patient researcher still counts as patient involvement or is something different. Sabi (above) argued it was clearly a different role. Vanessa felt in mental health research it was an important way of involving people – but that they often wanted to be seen as just researchers. Jo was someone who had made this transition – from research career in another field, to patient, to researcher in PPI. While some training was felt to be helpful to ensure people felt able to take part (see ‘Training needs for involvement’), there was also a feeling that researchers needed to change what they do to make it easier for people, rather than expect them to acquire expertise. Developing more creative ways to involve people beyond traditional committee structures is something we also discuss in ‘Finding people to involve in research’. Stuart and Jim argued that there is a place for lots of people with different levels of experience. Andy (above) felt it was not only wasteful but also unfair to limit people’s involvement just because they had developed some expertise. Some may want to move into different involvement roles and find some new project to contribute to. Sarah A found the whole debate around professionalisation frustrating, and thought using words such as ‘tame’ to describe people with long term involvement experience was insulting. There was considerable agreement that just because someone has some training this does not necessarily mean they lose touch with their experiences as a patient or carer. Researchers also saw the need to build trust, continuity and relationships as important, and give people time to grow into the role. Gail made a case for a sense of professionalism as a good thing for young people who get involved. For Gail, paying young people was important so they did not feel ‘de-professionalised’ compared to the other researchers. (See also ‘Payment, expenses and funding issues in patient and public involvement’). 

Some researchers drew a distinction between lay representatives appointed (or even employed) by charities or support groups, and those who were involved because of their personal experiences. John was particularly concerned that any conflict of interest should be declared.