The ‘Usual Suspects’ – Patient and Public Involvement (PPI) in DEMCOM
“No matter how complicated the research, or how brilliant the researcher, patients and the public always offer unique invaluable insights. Their advice when designing, implementing and evaluating research invariably makes studies more effective, more credible and often more cost efficient as well” (Professor Dame Sally Davies, Department of Health1)
September is World Alzheimer’s month and we are now nine months into our DEMCOM study and still learning and reflecting on how best to involve people living with dementia and their carers. We want to involve people not just as participants but also to help shape and design our research. There is often a cry in PPI about the ‘usual suspects’2 and people not being ‘representative’3. We have been reminded by our PPI contributors that we must not only include people recently diagnosed but also those diagnosed for some time. So we are trying to reach out and involve different individuals and groups throughout our research cycle. To date we have had 63 cases of PPI input from 51 different individuals. Some people have not been involved with research at all before (local dementia groups, neighbours, community groups) and others are very experienced (such as the Alzheimer’s Research Network and members from our Public Involvement in Research group (PIRg) at the University of Hertfordshire). There is a need to be flexible so that people can be involved in areas that interest them and use their skills in the best way. We have used the really useful guidance provided by DEEP. Checking with people how they want to be introduced, offering pre-meetings, meeting in places convenient for the person not at the University.
In terms of involvement in the Dementia Friendly Communities; we are also trying to evaluate how far people living with dementia have been involved in shaping the Dementia Friendly Communities. Have they been involved in decision-making, prioritising types of services and evaluation?
One major challenge (which sadly is not unique to dementia research) for PPI is payments. INVOLVE recommends PPI contributors should always get out pocket expenses (travel) and also rewarded for time. As some of our PPI contributors are not local, we have been working with our University HR department to see if there are ways to pay people for time (money or vouchers) without having to complete endless paperwork, ‘right to work’ checks (show passports) and visit the University4. We think we may have found a way forward! We are also trying to record PPI input and impact as we go along and feedback to PPI contributors on their contribution.
As a separate but connected part of my life, I visit my school friend’s mum who has had dementia for a number of years now and lives at home and I also volunteer at our local dementia group. People often provide very valuable insights into day to day life and what makes (or doesn’t make) a Dementia Friendly Community (DFC) without me asking or using the term (DFC)! Stories about shopping, banks, travelling, holidays and lots about GP services and hospitals.
If you would like to share experiences either because you are living with dementia, you are a carer or you are a researcher involved in dementia studies, we would love to hear from you.
1 Staley K. (2009) Exploring Impact: Public involvement in NHS, public health and social care research. INVOLVE, Eastleigh. http://www.invo.org.uk/posttypepublication/exploring-impact-public-involvement-in-nhs-public-health-and-social-care-research/
2 Beresford, P. (2013) Beyond the Usual Suspects, Shaping Our Lives, London. http://www.shapingourlives.org.uk/documents/BTUSReport.pdf
3 Maguire, K. and Britten, N. (2017) “How can anybody be representative for those kind of people?” Forms of patient representation in health research, and why it is always contestable” Social Science and Medicine, 183, 62-69. http://www.sciencedirect.com/science/article/pii/S0277953617302794
4 Mockford et al. (2016) A SHARED study-the benefits and costs of setting up a health research study involving lay co-researchers and how we overcame the challenges. Research Involvement and Engagement; 2:8