Understanding Indigenous Australians’ experiences of cancer care: stakeholders’ views on what to measure and how to measure it

There are disparities in cancer outcomes amongst Indigenous Australians that reflect a pattern of reduced access and barriers to engagement with health services. This study aimed to identify the key components of patient experience that should be included in any care experience measurements for Indigenous cancer patients. It also aimed to elicit the views of Indigenous people affected by cancer and their health providers on the appropriateness and likely acceptability of various data collection approaches for this patient group. Key themes identified by this study to be critical in shaping Indigenous patients’ experiences included feeling safe in the system, the importance of indigenous staff, barriers to care, the role of family & friends, effective communication & education, and the coordination of care and transition between services. Participants also expressed support for a face-to-face interview with a trusted person as the most appropriate means of collecting cancer care experience information. These results indicate that existing tools to measure experience are likely to miss some critical areas for Indigenous patients. This study highlights the urgent need for appropriate tools and approaches – developed by and with Indigenous people – to determine how well health services are meeting the needs of Indigenous cancer patients, and to identify areas in which these services can be improved. Read full text