Co-designing resources for knowledge-Based self-reflection for people living with Parkinson’s disease to better enable independent living

Parkinson’s disease (PD) is a complex progressive neurodegenerative disease. Individuals experience PD in a variety of ways, leading to difficulty in diagnosis, acceptance and on-going management. Service provision is complex and varied depending on provider, often with a lack of ‘joined up’ provision between acute hospital care and community care. This project utilised a participatory design methodology to identify patient and provider needs for PD services in the South West Peninsula (UK). A co-design approach was then used to develop tools, resources and service structures to meet these needs. The application of co-design in healthcare settings is fraught by challenges of power dynamics between healthcare professionals and ‘patients’. This can create difficulties in eliciting the ‘voice’ of the patient, or in facilitating their genuine engagement or agency in the process. Specific features of our co-design process sought to address these issues. The tools and resources resulting from this process aimed to facilitate independent living for people with PD, yet importantly to enable them to do so from an informed position, understanding complex medical knowledge in the context of their own personal life and priorities. As such, the resources intended to facilitate both the mobilisation of complex knowledge and self-reflection. The final resource pack has recently entered a feasibility trial of 150 people living with PD.