Alzheimer’s Society, Parkinson’s UK and the National Institute for Health Research have worked with both people affected by dementia and researchers to develop a new website. This practical guidance will support biomedical researchers to carry out the best patient and public involvement.
The primary aim of my work is to ensure that the voices of people affected by dementia are at the heart of every aspect of our research and to support the research community to do the same.
Alzheimer’s Society is a trailblazer in this as 21 years ago the Research Network was established to help inform our research funding programme.
All of our nearly 400 Research Network volunteers have a personal connection to dementia as carers, former carers, or living with dementia themselves.
Our Research Network volunteers' involvement has helped to ensure that dementia research is relevant, credible and focussed on the priorities of people affected by dementia.
Clinical versus basic research
The concept of involving people like this in research is called patient and public involvement and, as many researchers will be aware, today most research funders require it for their funding applications.
A lot of guidance has been written about how to actively and effectively involve patients and the public in clinical research, and evidence continues to grow about the value of this.
But there’s very little that is specifically aimed at researchers who work mainly in a laboratory, with very little or no contact with people affected by the condition they are studying.
Involving patients and the public can add value to lab-based research in lots of different ways.
From helping researchers to focus on areas that may ultimately benefit patients, to raising awareness of the importance of lab-based research in general, or of a particular area of research, and this involvement also motivates researchers and helps them to keep a focus on why their research is important.
Fiona Carragher, Director of Research at Alzheimer’s Society, said:
'As the real experts in dementia, people affected by the condition are widely involved in clinical research.'
'Today patient and public involvement is less common in lab-based research but no less valuable.
'Alzheimer’s Society alongside other charities are leading the way, providing practical tips and advice to ensure the real experience of dementia is taken into the lab to support, inspire and motive dementia researchers across the UK.'
Over the past year, I have worked with colleagues from other charities, researchers, and people affected by various conditions to develop guidance for laboratory-based researchers who want to involve patients and the public in their research.
We have created and launched a website that contains case studies and information about the benefits of involvement, how to go about it effectively, how to address challenges (including pandemics!) and much more.
We welcome feedback to ensure the site is relevant and helpful. Please do have a look, share it widely and let us know what you think!
Explore the guidance
Take a look at this practical guide to patient and public involvement in lab-based research, The guidance was co-produced by staff, patients, public and researchers involved in the work of Alzheimer's Society, Parkinson’s UK and the National Institute for Health Research.