Consumer engagement for patient safety: Strategies for consumer engagement for culturally and linguistically diverse consumers in cancer services

Background: Ensuring patient safety is a priority for health systems worldwide. Patient safety is a particular concern for cancer services due to the risks posed by highly toxic drugs, coupled with rapid innovations and subsequent shifts in cancer treatment and symptom management. Evidence to date has demonstrated that people accessing cancer services often experience patient safety events, and that people from culturally and linguistically diverse (CALD) backgrounds may be particularly exposed to risks in their care. Yet there is a gap in the research addressing patient safety amongst CALD populations. Consumer engagement strategies have been used to improve patient safety in the general population. Strategies include encouraging patients and families to ask questions, challenge health professionals and to report errors. Yet consumer engagement strategies have not been developed or tested with people from CALD backgrounds. This thesis therefore aimed to 1) determine the nature and rate of safety events experienced by CALD patients internationally, 2) explore the nature of safety events for CALD patients accessing cancer services in New South Wales (NSW), 3) explore how consumer engagement is conceptualised and realised for CALD consumers in Australia, and 4) use co-design to create a consumer engagement strategy to improve the safety of cancer services for CALD patients in in NSW. Methods: The thesis utilised a mixed-method sequential research approach to understand different facets of patient safety and consumer engagement that then informed the development of a co-designed patient safety intervention. Aims 1 and 2 were addressed via a systematic review that provided new knowledge of patient safety events for people from CALD backgrounds internationally, and a medical record review that reported evidence specifically within cancer services in NSW. To address aim 3, a document analysis of current engagement frameworks used by federal and state level health departments and agencies in Australia was conducted to provide new knowledge on how engagement in healthcare decision-making is operationalised for CALD consumers. Aim 4 was addressed using an adapted experienced based co-design (EBCD) method that consisted of contextual and experiential data collected through environmental audit and semi-structured interviews with CALD consumers and staff, and workshops to co-design a consumer engagement strategy for patient safety for CALD patients accessing cancer services in NSW. In addressing Aim 4, I also developed and validated the Audit for Consumer Engagement (ACE) tool to assess opportunities for consumer engagement generated through the physical environment of the cancer services. Consumer involvement in PhD was achieved through consumer advisory group and more specifically through a consumer cofacilitator to conduct the co-design workshops. Results: The systematic review indicated that CALD patients experience a higher rate of hospital-acquired infections, complications and medication-related errors and adverse events compared to non-CALD patients. The review also indicated that various socio-cultural factors, such as time spent in the country, health literacy, English proficiency, socio-economic status and family engagement, were associated with CALD patients’ exposure to safety events. Interventions to improve patient safety for people from CALD backgrounds were identified as needed but lacking. The findings from the medical record review demonstrated that medication and communication errors occur most commonly in cancer settings for CALD patients in NSW. The document analysis indicated that policy documents for consumer engagement lack clear guidance on specific mechanisms to realise consumer engagement for CALD consumers. The ACE tool was used to collect observational data as part of the adapted EBCD approach. Aggregate findings from the experiential and contextual data collected as part of adapted EBCD method indicated a lack of system level processes, procedures, and policies to address cultural and language requirements to support CALD consumer engagement in their safety. The workshops conducted with CALD consumers and staff as part of the adapted EBCD method resulted in co-design of the novel Making it Meaningful (MiM) instrument that focused on improving mediation discharge communication for medication related side effects and concerns. Conclusions: The thesis contributes new knowledge of the nature of safety events experienced by people from CALD backgrounds and particularly those accessing cancer services. Through co-design, the novel MiM instrument to improve patient safety amongst CALD communities was produced, along with methodological knowledge about optimising the conditions for enhancing CALD consumer participation in EBCD. Future work will evaluate the implementation of co-designed intervention and the adapted codesign process.