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Patient and public involvement at the Centre for Dementia

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Topics: 
approaches to dementia care, education and training, research
PPI event 1

This year the Centre for Dementia dedicated our annual event to patient and public involvement. We were keen to showcase the many good inclusive research studies at Institute of Mental Health, but we also committed to improving how we do this across the Centre.

Patient and public involvement (referred to as PPI, which can be confusing!) is a way of ensuring that our academic research is relevant and meaningful to people that it is aiming to benefit; i.e. people with dementia and their carers. We aim to include people at an early stage of a research project to enable their views to be able to influence the design of the research study. Involvement is separate from participation in a research study; when you may be interviewed or given a new treatment as part of the research. For involvement, researchers are seeking your knowledge and experiences and we also refer to these people as ‘experts by experience’.

Peter Riley got the day started by explaining his role within Alzheimer’s Society Research Volunteer Network. Along with many other people across the country, the volunteers are consulted on research funded by Alzheimer’s Society and comment on the importance of the topic and likelihood of leading to benefits to people with dementia and their carers. If you are interested in this network, see the following website: https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1109

PPI event 2

Three presentations gave examples of how ongoing research has involved people. Each research project was jointly presented by the expert by experience as well as the academic. If you would like to follow up these projects, see the following links: 

Falls in Care Homes (FinCH):

https://www.nottingham.ac.uk/research/groups/communityrehabilitation/projects/falls-in-care-homes-finch.aspx

Promoting Independence in Dementia (PRIDE):

http://gtr.rcuk.ac.uk/project/AF2A9C56-6E5C-4273-9455-1025314E2C2B

Broadening our Understanding of Good Home Care:

https://www.nottingham.ac.uk/research/groups/dementia/projects/bough/index.aspx

Between these presentations we held workshop sessions to discuss ways to improve patient and public involvement. There are many challenges for PPI, including raising awareness and recruitment. We would like a greater representation from Black and Minority Ethnic communities within our PPI groups, so we need better outreach and a warm welcome. The practical aspects of transport and potentially organising respite to enable a carer to attend a meeting. However we also were keen to explore the positives of PPI, including the warmth and sharing of experiences within the PPI group. Clearly, there are many technical aspects of research which shouldn’t get in the way of involving patients, carers and the public. However we aim to develop training sessions to enable people to gain confidence within the research projects.

To close the event, we had a summary discussion, as well as considering what next steps the Centre could take to promote and enable greater public participation in all of our research projects. If you are interested in becoming involved, please get in touch to discuss this further:

Neil Chadborn 0115 8232471 neil.chadborn@nottingham.ac.uk

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Derek Fisher

I arrived in London for this event as a sceptic about research as my remit is the here and now.

I went for curiosity and to see what was actually happening out there in the world of research.

Annie Pollock

Whenever I have to use a public toilet, I am fascinated to see how they are designed. Many years ago, there was a publication called ‘The good loo guide’ (first published, 1965) where loos in London were awarded stars for excellence. My fascination for loos in public places stems from then.

Tom Dening

I must confess that why I work with dementia is not something that I really planned. But one of the pleasures of living life is that things take their own course and you don’t know what’s going to happen next.