When designing, planning and conducting our research, it is vital that we keep those with direct personal experience of the conditions and situations we explore at the front and centre of the process.
We embed public involvement within every aspect of our work, consulting our public collaborators to inform all stages of our research including design, delivery, dissemination and implementation. Our public collaborators get involved with our research in various ways, working with the research team to advise on and carry out research tasks as well as contribute to publications and presentations.
"[Taking part was] time well spent talking to other people affected by dementia and feeling valued, and able to make contributions towards future research."
Public contributors are involved in research as active partners in the research process. This is different from being a research participant or learning about research findings. Researchers have one perspective on what is needed from research, but the perspective of members of the public may be quite different – and if we want our research to have a real-world impact, it needs to be as relevant and realistic as possible.
By working directly with people with lived experience as we design and deliver our research, we can make sure research is meaningful and helpful for those whom it aims to impact.
Our Lived-Experience Advisory Panel (LEAP) was originally founded with healthcare professionals, individuals with dementia, and their family carers who had participated in our HOMESIDE randomised controlled trial. The LEAP group meets three times a year and is involved with the early stages of the research process. This might mean shaping research questions, areas and topics, and working with researchers on funding applications for future studies.
Funding bodies like the National Institute for Health and Care Research (NIHR) now expect that the voices of people with lived experience will be heard prominently in bids. For instance, this year the LEAP group has laid the foundation for an NIHR funding application to develop an intervention combining music therapy and occupational therapy to support independence and prevent hospitalisations in people with dementia.
You can read more about public involvement in research on the National Institute for Health and Care Research (NIHR) website. You can also read more about ARU’s Let’s Shape Research Together programme, which enables members of the public to collaborate with academics at the early stages of research design.
If you'd like to know more and/or are interested in getting involved in CIMTR’s work as a public collaborator, email us at [email protected]
You can read about some examples of our public involvement work below.
MELODIC is a co-design study between CIMTR and Cambridgeshire and Peterborough NHS Foundation Trust (CPFT) to investigate how music therapy can reduce distress on NHS inpatient wards for people with dementia.
Co-design means that academic researchers work equally alongside the intended end users of the research. This includes stakeholders, such as people who work in a specific setting, and experts-by-experience, such as service users and their family members or loved ones. The end users advise on all aspects of the design, conduct and analysis of the research.
HOMESIDE was an international study that measured the benefits of shared music and reading activities for people with dementia and their family or informal caregivers.
Public involvement was embedded throughout the study, with national and international Participant and Public Involvement (PPI) groups that met regularly throughout the study to support and advise on delivery and dissemination. One of our PPI members even joined us for a presentation at the World Congress of Music Therapy in 2023 in Vancouver, Canada.