“Anyone can co-design?”: A case study synthesis of six experience-based co-design (EBCD) projects for healthcare systems improvement in New South Wales, Australia

Experience-based co-design (EBCD) is a quality improvement approach that is being used internationally to bring service users and health professionals together to improve healthcare experiences, systems and processes. Early evaluations and case studies of EBCD have shown promise in terms of improvements to experience and organisational processes, however challenges remain in participation around shared power and decision making, mobilisation for implementation, sustainment of improvements and measurement of outcomes. The objective of this case study was to explore the emergent issues in EBCD participation and implementation in six quality improvement projects conducted in mental health, rehabilitation, blood and bone marrow transplant, brain injury rehabilitation, urinary incontinence and intellectual disability settings by the Agency for Clinical Innovation (ACI), New South Wales, Australia (2015-2018). Methods: A two stage process of analysis was employed. The first stage involved a case to case synthesis using a variable-oriented approach. In this approach themes were identified within individual cases and compared across cases in workshops with all project leads. In the second stage the case themes were synthesised within an overarching thematic that was identified as the main challenge in effective participation and implementation in these EBCD projects. The results: themes identified in the first stage of analysis related to different methods for gathering experiences and the activities used for the co-design of improvements. Variability in service user participation within co-design workshops was also discussed. Four out of the six projects implemented improvements in full. The prominent thematic overarching all six EBCD cases was the need for guidance on capability development and co-design preparedness for all participants in co-design not only project leads. In conclusion, variability in EBCD implementation makes it difficult to identify which component parts are essential for improving experiences and services, and which of these lead to sustained changes and benefits for service users and health professionals. One way to address this is to develop a model for co-design capability and preparedness that is closely linked with a set of eight mechanisms that have been previously identified as essential to achieving change in healthcare improvement initiatives. Experience Framework This article is associated with the Innovation & Technology lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework) Access other PXJ articles related to this lens. Access other resources related to this len

Cohort profile : a data linkage cohort to examine health service profiles of people with intellectual disability in New South Wales, Australia

Purpose: People with intellectual disability are a minority group who experience poorer physical and mental health than the general population and have difficulty accessing healthcare services. There is lack of knowledge about healthcare service needs and gaps experienced by people with intellectual disability. This study aims to interrogate a large linked administrative data set containing hospital admissions, presentations to emergency departments (ED) and mortality data to provide evidence to inform the development of improved health and mental health services for this population. Participants: A retrospective cohort of people with intellectual disability (n=51 452) from New South Wales (NSW), Australia, to explore health and mental health profiles, mortality, pattern of health service use and associated costs between 2005 and 2013. The cohort is drawn from: the Disability Services Minimum Data Set; Admitted Patients Data Collection; Emergency Department Data Collection, Australian Bureau of Statistics Death Registry and Registry of Births, Deaths and Marriages. Mental health service usage among those with intellectual disability will be compared to a cohort of people who used mental health services (n=1 073 139) and service usage other than for mental health will be compared with published data from the general population. Findings to date: The median age of the cohort was 24 at the time of the last hospital admission and 21 at the last ED presentation. The cohort has a higher proportion of men than women and accounts for 0.6% of the NSW population in 2011. Over 70% had up to 5 ED presentations and hospitalisations between 2005 and 2012. A high proportion of people with intellectual disability live in the most disadvantaged neighbourhoods. Future plans: Results will be used to inform the development of more responsive healthcare, including improved interactions between health, social and disability supports. More generally, the results will assist the development of more inclusive policy frameworks for people with intellectual disability.10 page(s