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 every stage of research.
People with lived experience of a condition are considered to bring an expertise to the research process which uniquely complements the scientific expertise of researchers. More and more researchers are now including PPI in their research process.
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.
The Impact so far
Alzheimer’s Society has pioneered the active involvement of people affected by dementia through our award winning Research Network, since 1999.
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 to contributions from our dedicated volunteers. From campaigning for NICE to widen access to treatments, to increasing the focus on reducing antipsychotic use 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.
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 by surveying and interviewing members of the Research Network and researchers across the UK.
We identified four important areas that have been influenced by contributions from our Research Network:
- Impact on volunteers
- Impact on researchers
- Impact on research
- Impact on Alzheimer’s Society