Aboriginal patients driving kidney and healthcare improvements: recommendations from South Australian community consultations.

OBJECTIVE: To describe the experiences, perceptions and suggested improvements in healthcare identified by Aboriginal patients, families and community members living with kidney disease in South Australia. METHODS: Community consultations were held in an urban, rural and remote location in 2019 by the Aboriginal Kidney Care Together - Improving Outcomes Now (AKction) project and Kidney Health Australia. Consultations were co-designed with community members, using participatory action research, Yarning, Dadirri and Ganma Indigenous Methodologies. Key themes were synthesised, verified by community members and shared through formal and community reports and media. RESULTS: Aboriginal participants identified the importance of: family and community and maintaining their wellbeing, strength and resilience; the need for prevention and early detection that is localised, engages whole families and prevents diagnosis shock; better access to quality care that ensures Aboriginal people can make informed choices and decisions about their options for dialysis and transplantation, and; more Aboriginal health professionals and peer navigators, and increased responsiveness and provision of cultural safety care by all kidney health professionals. CONCLUSION: Aboriginal community members have strong and clear recommendations for improving the quality and responsiveness of health care generally, and kidney care specifically. IMPLICATIONS FOR PUBLIC HEALTH: Aboriginal people with lived experience of chronic conditions wish to significantly inform the way care is organised and delivered.

Real Ways of Working Together: co-creating meaningful Aboriginal community consultations to advance kidney care.

OBJECTIVE: To describe a process of meaningful Aboriginal community engagement that repositioned and valued community members' knowledge(s) and lived experiences while strengthening relationships, research processes and outcomes. BACKGROUND: Aboriginal Australians have the oldest continuous culture in the world, yet due to effects of colonisation, experience some of the world's poorest health outcomes. The AKction [Aboriginal Kidney Care Together - Improving Outcomes Now] project brought together Aboriginal people with lived experience of kidney disease, clinicians and researchers to improve kidney care. METHODOLOGY: Using Aboriginal methodologies of Ganma and Dadirri within community-based participatory action research (cb-PAR), a core advisory group of Aboriginal people with lived experiences of kidney disease worked closely with clinicians and researchers. RESULTS: Three community consultation workshops that deeply valued Aboriginal knowledge(s) were co-created. Community members formed a reference group, established partnerships and influenced health research, policy and service provision. Non-Indigenous researchers engaged in critical self-reflection and levelling of Western-Aboriginal and clinician-consumer power imbalances. CONCLUSIONS: Deeply respectful community engagement is possible through co-creation and cb-PAR. It results in multiple positive impacts and beneficial relationships between community members, clinicians and academics. IMPLICATIONS FOR PUBLIC HEALTH: Meaningful consultation with Aboriginal communities guides culturally safe research processes, health policy and service delivery.