By Matt Murray, Research Engagement Manager, Alzheimer's Society

Published: Monday 25 June 2018  

We all know how crucial evidence is to research. We rightly place a high threshold for evidence for treatments before they are licensed and made available to patients. Over the last year Alzheimer’s Society has been considering the evidence surrounding how it involves people affected by dementia in research.

Patient and public involvement

Patient and public involvement (PPI) in research is a philosophy whereby research is carried out ‘with’ or ‘by’ people affected by the condition rather than ‘about’, ‘for’ or ‘to’ people. 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.

People with lived experience of a condition are considered to bring an expertise to the research process which is unique to the scientific expertise of researchers. More and more researchers are now including PPI in their research process not just because funders tell them to but because they believe that it’s the ‘right thing to do’ and improves the quality and relevance of their work.

Changing research

Belief or instruction alone isn’t enough to change the way in which researchers work.

Researchers, more than most, value the importance of evidence to change the way in which medicine, care, services or indeed research is carried out. If they don’t see or understand the value of a change they will look for evidence to prove why they should change their ways of working.

Alzheimer’s Society has pioneered the active involvement of people affected by dementia through our award winning Research Network, since 1999. We continue to be leaders and innovators across the charity sector in the way in which we facilitate PPI throughout the research process.

In 2013 we founded a shared learning group for charities who support PPI in research (which now has almost 35 members). Our Research Network delivers and influences PPI not just from within our grants programme but across other funded research in the UK and internationally via our Research Partnerships.  

The impact so far

It’s clear why the Research Network is valued so highly across dementia research. 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) over the past 20 years our Network has been at the forefront of making these improvements.

We often hear from researchers and our volunteers how valuable the contributions of the Research Network are. Our volunteers have provided input on identifying the best research outcomes to measure, improved recruitment to research studies, helped with the data collection and analysis and supported research teams to communicate their research results.

Providing the evidence

In 2017 we decided to collect some of the evidence which we hear anecdotally and produce our first ever impact report for PPI. We surveyed and interviewed members of the Research Network and researchers across the UK.

Following this we identified 4 important areas that have been impacted by contributions from our Research Network:

  • Impact on volunteers
  • Impact on researchers
  • Impact on research
  • Impact on Alzheimer’s Society

Read the full PPI Impact report here

The evidence around PPI in dementia research is growing but there is still a need to improve the evidence that is in the academic domain. We have partnered with the journal Dementia to guest edit an edition due for publication in November to tackle this issue. It will bring 9 new articles into the academic literature that articulate the impact of PPI but crucially also help all involved in dementia research  face the challenges which still remain in carrying out PPI meaningfully and well.

Moving from ‘proving to improving’

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. One key area we have already identified is raising the number of people living with dementia in the Research Network as their voice is unique and crucial to understanding some of the ethical challenges in delivering dementia research.

The next time you’re asked by a sceptical researcher why PPI should be a central part of your charity’s research why not respond with ‘the evidence suggests that it’s beneficial if we do it well - how can we make it work for you?’