Kulay Kalingka, a national cohort study of Aboriginal and Torres Strait Islander peoples’ cancer experiences: a study protocol

Abstract

IntroductionAboriginal and Torres Strait Islander peoples are the First Peoples of Australia. Since settler colonisation, Aboriginal and Torres Strait Islander peoples have experienced disparities in health outcomes, including cancer, when compared with non-Indigenous Australians, including higher cancer incidence and mortality rates, and lower participation in cancer screening programmes. Data to monitor and improve outcomes are limited.Aims, method and analysisThe Kulay Kalingka Study will be a national cohort study aiming to understand Aboriginal and Torres Strait Islander people’s beliefs about cancer and experiences with cancer care and treatment, and to improve experiences and outcomes. It will be nested within the Mayi Kuwayu Study, a national community-controlled cohort study of Aboriginal and Torres Strait Islander people (n>11 000), with supplementary in-community recruitment.Mayi Kuwayu Study participants aged ≥18 years who consented to being recontacted, and a diversity of local community members will be invited to participate through completing a questionnaire relevant to their cancer status, aiming to recruit 2800 participants without prior doctor-diagnosed cancer and 700 with a cancer diagnosis.This community-driven data will enable monitoring and reporting of national trends over time and will guide national cancer control research, policy and clinical care, to improve outcomes for Aboriginal and Torres Strait Islander peoples.Ethics and disseminationThe Kulay Kalingka Study has ethics approval from Australian Institute of Aboriginal and Torres Strait Islander Studies (#EO324-20220414 and REC-0121) and the Australian National University (#2022/465). The Kulay Kalingka Study is being developed with Aboriginal and Torres Strait Islander communities, following the Maiam nayri Wingara Indigenous Data Sovereignty Collective principles. Meaningful, accessible and culturally adapted study findings will be disseminated to Aboriginal and Torres Strait Islander communities through activities including community workshops, reports and feedback sheets, and in other ways as determined by the community. We will also return data to participating communities.