James Pickett, Head of Research at Alzheimer’s Society
Over the past twenty years an increasing value has been placed on including the lived experience of patients and the public in research covering the full spectrum of basic science through to health services. More and more research now includes PPI, and whilst many agree that morally and ethically people with lived experience of a condition should be involved in research, the evidence and impact of doing so is relatively lacking.
Changing research
Alzheimer’s Society has pioneered the active involvement of people affected by dementia through our award winning Research Network [1], since 1999. Many of Alzheimer’s Society’s achievements in the research field have come about due contributions from our dedicated volunteers. From campaigning for NICE to widen access to treatments, to increasing the focus on reducing antipsychotic use, to lobbying for more research into improving care (and implementing it into practice) people with lived experience are at the forefront of making these improvements.
We are now creating a much more systematic evidence base for the impact of involving people affected by dementia. In July 2018 we published a report [2] about the unique contribution and benefits of PPI. In October an edition of ‘Dementia: the International Journal of Social Research and Practice’ [3] co-edited by Alzheimer’s Society was published that shares just a few of the many different ways the voice of people with dementia can be heard through research. The journal includes 11 articles co-authored by researchers (open access until the end of 2018) and people affected by dementia, many of whom are our very own Research Network volunteers.
Moving from ‘proving to improving’
Through this journal and our own impact report [1] we now have evidence that backs up our belief that PPI is not only the ‘right thing to do’ but where done effectively gives a number of benefits. We can talk more confidentially about how the Research Network is having an impact.
We are moving the conversation about PPI forward from ‘proving’ why it should be done to ‘improving’ how we can do it in partnership with our researchers. Although PPI is clearly valuable, it is by no means perfect and can present challenges for researchers, volunteers and funders.
Breaking down barriers to PPI
PPI is not a one size fits all initiative, it’s clear that PPI must be tailored to the needs of the project, the researcher and the volunteer. PPI is sometimes still ‘owned’ by funders and ‘required’ of researchers through their funding conditions and criteria in a way researchers don’t always feel adds to their projects. While there are some fabulous examples of valuable PPI – more can be done.
We want researchers to own PPI; helping to define the best WHO to involve, WHEN to involve, HOW to involve and WHAT to involve. Such models may lead to more effective partnerships between researchers and public.
Paving the way
Whilst we need to support researcher to take ownership of PPI there are a number of ways that organisations such as Alzheimer’s Society can tackle barriers to effective PPI for all those involved in research.
- We are frequently asked how best to support people at the later stages of dementia to be involved in research. Best practise guidance for researchers working with those in later stages or with profound communications problems may help researcher to feel more confident making their work accessible.
- There are some concerns that the current model of PPI reinforces an imbalance in inclusion of volunteers, for example those that can afford not to be paid for their time are often involved whilst others are excluded. More is to be done here.
- Unfortunately there is a perception that including volunteers as co-researchers can create a barrier to seeking and receiving ethical and R&D approval. Developing good practise guidance and materials for ethics committees might help to dispel this myth.
The part played by PPI in commercial clinical research is unknown territory and one which Alzheimer’s Society is keen to encourage. The benefits of PPI do not by any means stop at academic research and could be even greater in the commercial field in some circumstances. We have begun work to develop good practise guidelines for the commercial industry alongside other third sector organisations to support them to carry out meaningful PPI which will enhance their work.
As we’ve seen in recent years, PPI in research continues to evolve to improve and mould to the needs of the research community. Steps towards standardised reporting of PPI in journals (and project reports) with regard to both positive and negative impact would help to continue to refine and advance our involvement of people affected by dementia.
Alzheimer’s Society will continue to be committed to embedding PPI in dementia research and we look forward to working with researchers to maximise its potential.
Find out more:
- About our Research Network of PPI volunteers and their impact [1]
- How we can support you and your research through PPI by contacting our Research Engagement team at researchnetwork@alzheimers.org.uk [4]