Moving from Experiences to Solutions: ​ Insights from Public Involvement and Engagement and Co-production Activities for Building Mathematical Models that Represent Living, ​ and Caring for Someone, with Multiple Long-Term Conditions ​Including Dementia

Background
Public Involvement, engagement and co-production, have different definitions internationally. However, they all aim to include the voices of those with lived experience in shaping research or services. In the UK, Public Involvement is an established requirement for funding from research councils. Co-production is recommended for the development of complex interventions and widely used in social care.
Method
Over 18 months, members of the public worked with researchers to explore how experiences of using health and care services for long-term conditions when living with dementia might be improved. A lived experience advisory group of people living with dementia (n=9) and a series of co-production workshops with people living with and caring for someone with dementia (n=5) informed the building of mathematical models for testing changes to services. We also visited a number of community dementia support groups.
Findings
The honesty in sharing experiences was apparent and the wish to change systems for the better. The complexity of the models (of health and care systems) were simplified and shared for comment on their accessibility. When used as discussion tools and for critique of the research, people were able to engage with reference to their own personal experiences and articulate what was important for them. However, moving to discussion of broader service and system-based solutions was often challenging.
Conclusion
Discussions with groups highlighted the importance of involving a wide range of diverse voices in public involvement. For service redesign and intervention development, there remains a question about what can and should be expected from people with lived experience and accept that it is often difficult for individuals (with more pressing priorities) to see the wider system perspective. The importance of working with trusted facilitators, building relationships, trust, taking time and feeding back continues to be vital for reciprocal relationships.