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'Patient involvement is not tokenistic - it has real value'

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Patient and public involvement groups ensure that carers and service users have their voices heard and become involved in research, says Liz Charalambous

I was invited recently to present my PhD research project on dementia to a patient and public involvement (PPI) group. I valued the opportunity, knowing that it is crucial for service users to be involved at all levels of research; it encourages a wider perspective and means there is a greater chance that research findings will result in meaningful change – the very reason I became interested in research in the first place.

Apart from the obvious advantages of involving people who have navigated and ‘survived’ the healthcare system, the group’s diversity means everyone contributes something different. There is strength in numbers, with a teamwork approach across all disciplines. PPI is a common-sense approach that serves as a link between the reality of living with, and caring for, a person with dementia, and the altruistic and sometimes sterile world of academia.

The role of a representative can be demanding – it requires time and energy to commit to meetings and read through documents (although there is some reimbursement). Jargon can be off-putting to newcomers who don’t have a health background. Larger studies can feel overwhelming, with representatives swamped by ‘more powerful’ groups. When there is only one PPI representative – in an ethics review meeting, for example – there may be worries about tokenism, as it begs the question of how that person could represent the myriad views of others. However, if groups work together with a common agenda to further the care of people with dementia, it is likely that successful and meaningful relationships will be established.

Such groups ensure carers and users of services become involved in research on a number of levels – not just their design, but in ethics committees and on interview panels. I have met representatives who described how it makes them feel valued, motivated and involved. They have an opportunity to share experiences, good and bad, with others who understand. A support network emerges when representatives feel empowered by being listened to. This is of immense value to healthcare and should be taken seriously, as it increases the likelihood that they will find the experience rewarding and stay for the long term.

On a personal note, I deeply value the feedback from the group, as it makes me question myself and the project, and view things from an entirely new viewpoint. PPI representatives show us the reality of a life of caring for people with dementia, which is important on so many levels. Effective PPI maximises the success of healthcare research, as we strive to tick the impact-agenda box. If researchers cannot demonstrate sound foundations of PPI, then their research proposals will be rejected by ethics committees. PPI is neither tokenistic nor mere rhetoric, but something tangible and of real value.

I love the sense of collaboration that leads to progress. I see barriers dissolve and hierarchies flattened to make meaningful changes for people with dementia and their carers, as we learn together, and from each other, to improve services.

Liz Charalambous is staff nurse, Nottingham University Hospitals Trust and PhD student at University of Nottingham.


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