Measuring cancer care experiences of Aboriginal and Torres Strait Islander people in Australia: Trial of a new approach that privileges patient voices

This study examined a new method for measuring the care experiences of Aboriginal and Torres Strait Islander people with cancer: the Indigenous People's Experiences of Cancer Care Survey (IPECCS). The study assessed IPECCS's: 1) performance; 2) ability to elicit information useful for service improvements; and 3) implementation potential. Three participant groups were recruited from five Australian cancer treatment sites: 1) Aboriginal and Torres Strait Islander people with cancer (+/- support person); 2) interviewers; and 3) health services staff. Trained interviewers administered IPECCS to participants with cancer in audiotaped sessions. Paper forms and transcripts were compared to assess performance, and problems/potential solutions reported by participants with cancer were assessed for actionability. All participant groups completed separate interviews regarding IPECCS. Selected implementation measures were assessed based on interviews and IPECCS administration. Participants (n=31) included 11 Aboriginal people with cancer, 7 support people, 4 interviewers, and 9 health staff. Aboriginal people with cancer spoke at length about their cancer care experiences and identified problems and potential solutions that could be acted upon by health services. Although some parts of the IPECCS form were well-completed, recording was inconsistent and inadequate. Aboriginal people with cancer and interviewers predominantly supported the IPECCS process; while most health staff supported the aims, they questioned its feasibility. Capturing domains of patient experience relevant to Aboriginal and Torres Strait Islander people requires a culturally safe, strengths-based approach. The tension between facilitating meaningful patient engagement and maximizing the efficiency of data collection and use must be resolved to realise the benefits of such an approach.