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Abstract
Introduction Aboriginal 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 analysis The 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 dissemination The 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.
- EPIDEMIOLOGY
- ONCOLOGY
- Health Equity
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STRENGTHS AND LIMITATIONS OF THIS STUDY
The Kulay Kalingka Study questionnaires were developed through consultations with Aboriginal and Torres Strait Islander peoples and communities Australia-wide and includes items on cancer care, cancer beliefs, accessibility of cancer screening programmes and cancer survivability.
The Kulay Kalingka Study will provide Aboriginal and Torres Strait Islander led, designed and governed national-level data to monitor and guide improved cancer awareness, understandings of care, treatment, and service delivery for Aboriginal and Torres Strait Islander peoples.
It will contribute to monitoring and reporting on 37 of Cancer Australia’s National Aboriginal and Torres Strait Islander Cancer Control Indicators, where no data currently exist.
The study is designed to be inclusive of the diversity of the Aboriginal and Torres Strait Islander population and is not designed to be representative of this population.
Introduction
We begin by acknowledging the sovereign Indigenous peoples around the world who are the custodians of their lands, waterways and skies, who have cared for and maintained country, culture and community since time immemorial. We acknowledge the ancestral lands of the Ngunnawal and Ngambri peoples on which this study protocol was written, and thank the Elders past and present for our safe passage through their country.
By qualification, we, the authorship team, are researchers, but our positioning from the onset of this Study is that of sovereign Aboriginal and Torres Strait Islander peoples with our own cultures, histories and communities and people supporting such sovereignty. We have a shared commitment of service to mob that seeks to understand how mob can live healthy lives. We follow the indigenist and indigenous research methodologies set before us by trailblazers including Nurungga Professor Rigney,1 Palawa distinguished Professor Walter,2 Opaskwayak Cree Researcher Wilson3 and Ngāti Awa, Ngāti Porou, Tūhourangi Professor Tuhiwai Smith.4 By doing so, we privilige our cultural knowledges, ways of knowing, being and doing, and conduct our research with respect, responsibility, genorosity, obligation and reciprocity to our peoples.5
Aboriginal and Torres Strait Islander peoples maintain the oldest living cultures in the world, with an estimated 250 Aboriginal and Torres Strait Islander languages and 600–700 dialects across the continent prior to colonisation.6 Along with diverse languages, Aboriginal and Torres Strait Islander groups also have diverse histories, cultures, lore/law and other practices and have lived, for generations, healthy and culturally enriched lives.7 8 Colonial processes and policies dispossessed and dislocated Aboriginal and Torres Strait Islander peoples from our families, country, cultures and languages, but culture remains strong and languages continue and many are being reclaimed. Currently, there are an estimated 798 400 Aboriginal and Torres Strait Islander peoples living in Australia. Over 30% of the population lives in major cities of Australia, while 24% live in inner regional Australia, 20% in outer regional Australia, and 7% in remote or very remote Australia.9 Today, the Aboriginal and Torres Strait Islander population bears a disproportionate burden of disease, including cancer.
Prior to colonisation, cancer impacted Aboriginal and Torres Strait Islander populations but the attribution of illness to cancer was limited.10 Only in the last two decades has cancer received attention specific to our population.11 The quality of data also limits what we know about diagnosis and treatment outcomes via cancer registry data. Problems with data quality include issues with misidentification and underidentification of Aboriginal and Torres Strait Islander peoples in general administrative datasets and cancer-specific datasets,12 13 and a lack of national data on screening programmes.14 In more recent times cancer has become recognised as one of the leading contributors to the burden of disease for Aboriginal and Torres Strait Islander peoples.15
Between 2015 and 2019, cancer and other neoplasms were the leading cause of death for Aboriginal and Torres Strait Islander peoples in states where adequate data on deaths exist, contributing to almost a quarter of total deaths.15 The most commonly diagnosed cancers are lung, breast, colorectal, prostate and head and neck cancers. These cancer types are amenable to prevention and have high fatality rates.15
In 2012–2016, for all cancers combined, incidence was 14% higher among Aboriginal and Torres Strait Islander peoples compared with non-Indigenous peoples.16 When diagnosed, Aboriginal and Torres Strait Islander peoples are more likely to be at a more advanced stage of disease impacting prognosis and treatment options, have lower rates of hospitalisations (due to the later stage at diagnosis and barriers to treatment such as distance from transport services) than non-Indigenous people, and wait longer for surgery.15 From 2015–2019, the age-standardised mortality rate for all cancers for the Aboriginal and Torres Strait Islander population was 45% higher than in the non-Indigenous population.16 Cancer does not only affect our older community members. Concomitantly, the median age of an Aboriginal and Torres Strait Islander person in 2016 was 20 years compared with 38 for non-Indigenous people, with some types of cancers showing up earlier in the Aboriginal and Torres Strait Islander population compared with the non-Indigenous population.16
There are a range of risk factors that are associated with an increased likelihood of people in the general population developing cancer. Key modifiable risk factors include tobacco smoking, alcohol, obesity and exposure to too much sun (melanoma).16 There is a growing body of evidence internationally that links discrimination and racism to increased prevalence of modifiable risk factors including tobacco smoking, higher levels of alcohol use and obesity.17–19 The increased prevalence of, and mortality from cancer among Aboriginal and Torres Strait Islander peoples is largely due to socially driven increased prevalence of cancer risk factors.20 Additional upstream factors that affect Aboriginal and Torres Strait Islander peoples’ cancer experiences include barriers to accessing cancer services such as screening and treatment.21 22
Aboriginal and Torres Strait Islander community beliefs about cancer are varied. Many Aboriginal and Torres Strait Islander peoples understand that tobacco, poor diet and other risk factors cause cancer.23 However, the general population often look to external factors to explain things that are happening to them, rather than looking to factors within their own control.24 For example, some Aboriginal and Torres Strait Islander communities are unwilling to talk about cancer, believe it is black magic, or believe it to be contagious. Further, some believe cancer invaded the bodies of Aboriginal and Torres Strait Islander peoples when colonisers arrived in 1788.10 25 26 In some Aboriginal and Torres Strait Islander languages, including Aboriginal languages across the Northern Territory, there is no word for cancer.27 Regardless of these beliefs, it places a heavy burden on those diagnosed with the disease, as well as their families, friends, carers, elders and the community.
It is in this context that the National Aboriginal and Torres Strait Islander Cancer Framework 2015 was developed by Cancer Australia to provide high level guidance for stakeholders working to improve cancer outcomes and reduce disparities.28 It aligns with the optimal care pathway (OCP) for Aboriginal and Torres Strait Islander peoples with cancer, which identifies seven critical steps in the patient journey (see figure 1).28
Patient-centred care for Aboriginal and Torres Strait Islander people.
Cancer Australia developed a set of National Aboriginal and Torres Strait Islander Cancer Control Indicators (NCCI) to monitor performance across the OCP areas.28 There are 22 indicators in total, and progress in these areas is assessed using 57 measures comprising:
Twenty measures which are currently reported on the website, available at: https://ncci.canceraustralia.gov.au/aboriginal-and-torres-strait-islander-cancer-control-indicators.
Thirty-seven measures where no data exist and/or require further progress for data development, including participation in national cancer screening programmes (ie, cervical, breast, bowel); participation in clinical trials; experiences of racism/disclination in healthcare; beliefs about whether cancer can be prevented.
No data exist for over half of the Aboriginal and Torres Strait Islander NCCI identified measures, and as a result we cannot monitor progress in a range of areas. It is essential that data about our attitudes, beliefs and experiences of cancer be developed and governed for and by Aboriginal and Torres Strait Islander peoples. This will help ensure community and relational accountability, which is particularly important given the ongoing colonial context outlined above, including the programmes and policies that have aimed to actively erode power, social structures and community resources. In response to the impacts of cancer and the lack of data to inform the Aboriginal and Torres Strait Islander NCCI, a proposed national study is being developed.
The Kulay Kalingka Study will be a prospective national cohort study that is designed to understand Aboriginal and Torres Strait Islander people’s beliefs about cancer; experiences with cancer care and treatment; and to improve experiences and outcomes for Aboriginal and Torres Strait Islander peoples with cancer and their families. The study is designed to inform the Cancer Australia priority areas. The study name, ‘Kulay Kalingka’ translates to ‘net bag in the water’ in Ngiyampaa (Wongaibon) language. Woven net bags have been used by rainforest Bama (peoples) to process highly toxic foods, whereby foods are placed in net bags and run through a slow-moving stream to leach out their toxins and make them safe over time. This concept is woven into the Kulay Kalingka Study: the net bag is symbolic of how people and families fighting cancer can include Aboriginal and Torres Strait Islander health and well-being concepts for cultural, medicinal and spiritual healing, alongside clinical treatments (figure 2).
Photo of net bag created by Yirrganydji and Nughi artist Nicole Enoch-Chatfield (Goompi’s girl).
Methods and analysis
Patient and public involvement statement
The Kulay Kalingka Study arose from Aboriginal and Torres Strait Islander community needs, to better understand cancer attitudes, beliefs and experiences and from calls for the inclusion of Aboriginal and Torres Strait Islander patients, families and communities in cancer research.29 Additionally, the Study arose from a call from Cancer Australia to improve cancer outcomes for Aboriginal and Torres Strait Islander peoples, including across cancer prevention, screening and early detection, diagnosis and treatment, palliative care and survivorship, and their corresponding service areas.30 Aboriginal and Torres Strait Islander peoples are involved in all stages of the project, from conception, development and survey testing through to analysis and dissemination.
Mayi Kuwayu Study
The Kulay Kalingka Study is nested within ‘Mayi Kuwayu: the National Study of Aboriginal and Torres Strait Islander Well-being’ (the Mayi Kuwayu Study). The Mayi Kuwayu Study is a large-scale, longitudinal study of Aboriginal and Torres Strait Islander adults aged ≥16 years with approximately 11 000 participants to date. The study aims to improve the understanding of the role cultural factors play in Aboriginal and Torres Strait Islander peoples’ well-being and their interaction with standard health risk and protective factors. The Mayi Kuwayu Study is developed and governed by Aboriginal and Torres Strait Islander peoples.31 32 The Mayi Kuwayu Study has developed and maintained Aboriginal and Torres Strait Islander community partnerships around Australia,33 and the Kulay Kalingka Study uses these strong relationships throughout its development.
It is essential that Aboriginal and Torres Strait Islander communities are involved in questionnaire development and testing. This participatory-based research approach is necessary in order to help ensure the Study meets the dual criteria of Aboriginal and Torres Strait Islander community relevance and scientific excellence. Aboriginal and Torres Strait Islander peoples are involved in and lead all stages of the Kulay Kalingka Study.
There are three stages to Kulay Kalingka Study: Stage 1—the development of the questionnaires, incorporating a literature search, questionnaire item refinement and pilot testing (figure 3); stage 2—the recruitment and stage 3—follow-up recruitment (figure 4).
Stage 1 (development of questionnaires).
Kulay Kalingka Study recruitment. *Mayi Kuwayu participants, including n ∼600 with a cancer diagnosis and n ∼2400 without a cancer diagnosis.
Stage 1: development of questionnaires
Existing item search
Between October 2021 and April 2022, we explored existing questionnaire items for potential use in the Kulay Kalingka Study questionnaires. This was to identify existing questionnaire items and measures that map to the 22 Aboriginal and Torres Strait Islander NCCI, using Google Scholar. Search terms were developed by the Kulay Kalingka Study team. Final search terms were:
(Aborigin* OR “Torres Strait*”) AND (cancer) AND (awareness OR beliefs OR prevention OR “risk reduction” OR “smoking cessation programs” OR “quit smoking programs” OR screening OR “screening test follow up” OR incidence OR “stage at diagnosis” OR “culturally competent health service” OR treatment OR “patient experience”)
The second search was conducted in Google Scholar to find supplementary questionnaire items and measures that relate to specific cancer types. Final search terms were:
(Aborigin* OR “Torres Strait*”) AND (cancer) AND bladder OR breast OR cervical OR bowel OR “head and neck” OR kidney OR lung OR liver OR melanoma OR throat OR ovarian OR pancreatic OR prostate OR stomach OR thyroid OR uterine OR “cancer of unknown primary site” OR “non-Hodgkin lymphoma”
Handsearch
If research papers did not publish questionnaire items or measures, we contacted corresponding authors and requested these questionnaire items or measures. We also worked with experts in the field and checked reference lists of included material for other relevant questionnaire items and measures.
Finally, items and measures that met the following three criteria were moved into the item development stage for inclusion or modification:
Had been developed for or used with Aboriginal and Torres Strait Islander peoples.
Captured information about cancer knowledge, attitudes, beliefs, screening, diagnosis, treatment, services and/or systems.
Map onto the Aboriginal and Torres Strait Islander NCCI.
Novel item development
We also developed new items and measures where no appropriate items existed. These novel quantitative and qualitative items were created in collaboration between the Kulay Kalingka Study team, the Thiitu Tharrmay Aboriginal and Torres Strait Islander reference group, Aboriginal and Torres Strait Islander individuals and communities, and Cancer Australia.
Draft questionnaires
After collating and developing the draft items, two draft questionnaires are formed. Questionnaire 1 is designed for people who have ever had a cancer diagnosis and focuses on indicators related to cancer diagnosis, care and treatment. Questionnaire 2 is designed for people who have never had a cancer diagnosis, which focuses on indicators related to knowledge about cancer and cancer prevention. Across both questionnaires are items relating to national cancer screening programmes, cancer awareness and cancer beliefs.
Pilot testing: recruitment
Aboriginal and Torres Strait Islander communities will self-nominate to be part of the pilot testing processes, based on existing community relationships.33 Pilot testing will be conducted with self-nominated communities until good representation across the ASGS Remoteness Areas 2011 (Remote, Inner Regional and Major City) is achieved. If multiple communities self-nominate from the same ASGS Remoteness Areas (2011), the community will not be turned away from participating; all communities who want to participate can participate. Each community will self-determine the constitution of the focus groups, in line with Principle 1 of the Australian Institute of Aboriginal and Torres Strait Islander Studies Code of Ethics for Aboriginal and Torres Strait Islander Research.34
There will be three focus groups at each community, with 6–8 participants in each focus group. Participants will be selected by the communities through word-of-mouth building on relational accountability. Focus groups will be independently conducted with people who have had a cancer diagnosis, and people who have not had a cancer diagnosis. A minimum of 30 pilot-testing participants with a cancer diagnosis will pilot-test draft questionnaire 1. A minimum of 30 pilot-testing participants without a cancer diagnosis will pilot-test draft questionnaire 2. Focus group participants will be conducted with Aboriginal and/or Torres Strait Islander peoples, aged ≥18 years. Pilot-testing focus groups are voluntary and participants can leave at any time.
Pilot testing: questionnaire refinement
Each focus group will be conducted by two Aboriginal or Torres Strait Islander facilitators with experience in conducting focus groups. Focus groups are held in culturally safe spaces as self-determined by the community. Focus groups will follow the probing approach method, where the facilitator’s role is proactive and direct questions are asked to extract specific information from participants.35 Participants are provided with a draft questionnaire and asked about questionnaire length, cultural appropriateness of items, interpretation and misunderstandings of items, and the overall tone of questions being asked. Participants can provide this feedback either on the page or to the focus group facilitators.
Focus group feedback will be collated and iteratively incorporated to the questionnaire by Aboriginal and Torres Strait Islander members of the research team. The purpose of this process will be to ensure the wording of items supports understanding, reduces cognitive burden and to refine questionnaire items, including item inclusion, exclusion and/or modification. The goal is to support appropriateness, accuracy and interpretation of items so meaningful data are yielded.36
Final questionnaires
The result of the literature search, hand search, novel item development and pilot testing are the final questionnaires.
Stage 2: recruitment
Mail out recruitment
The Kulay Kalingka Study primary sampling frame is from baseline Mayi Kuwayu Study participants aged ≥18 years who have consented to being recontacted by the Mayi Kuwayu Study. Mail out recruitment will begin in mid to late 2023.
All existing Mayi Kuwayu Study participants who self-reported a doctor diagnosed cancer (n≈600 participants) will be invited to participate in questionnaire 1 of the Kulay Kalingka Study. Existing participants who have never had a cancer diagnosis (n≈2400) will be invited to participate in questionnaire 2, with the goal of recruiting four participants without cancer for every one participant with cancer. Selection of participants who have never had a cancer diagnosis into the Kulay Kalingka Study sample will be stratified by age, gender and remoteness (see table 1).
Selection of Kulay Kalingka Study participants (restricted to those who have consented to follow up)
All potential Kulay Kalingka Study participants will be posted a survey pack in the mail (containing an information sheet, a questionnaire, a national support service brochure and a prepaid reply envelope).
Supplementary community recruitment
In addition to recruiting existing Mayi Kuwayu Study participants, the Kulay Kalingka Study will conduct supplementary recruitment across ASGS Remoteness Areas 2011, following the same method as pilot testing recruitment. Supplementary community recruitment will begin in mid to late 2023 from saltwater, freshwater, desert and Island groups, and living across urban, regional and remote Australia to ensure diversity of experiences are captured in the Kulay Kalingka Study. This will enable Aboriginal and Torres Strait Islander peoples with or without a cancer diagnosis, and from diverse settings, contexts and environments, to participate in the Kulay Kalingka Study.
Participation in all stages of the Kulay Kalingka Study is voluntary. Participants provide informed consent and can withdraw consent at any time. Potential participants will receive a plain-language information sheet about the study, along with the consent form, support services directory and questionnaire.
Stage 3: follow-up recruitment
The first wave of recruitment will commence mid to late 2023. The second wave of follow-up questionnaires will commence approximately 1 year after baseline data collection completion. This follow-up wave will recruit the same Kulay Kalingka Study participants and additional participants through supplementary community recruitment to help with participant drop-off. This initial follow-up will allow us to report on changes in cancer attitudes, beliefs and experiences over time.
There is also potential for ongoing follow-up waves if funding allows, to enable further longitudinal examination of cancer attitudes, beliefs and experiences over time.
For all waves, the intention is that participants will complete the same questionnaire they completed in the first wave of data collection (acknowledging we make any changes in response to participant feedback, issues with original questionnaire or new priorities). However, if a participant’s cancer diagnosis status changes between waves, they will cross from the without cancer diagnosis group to the with cancer diagnosis group.
Analysis
Descriptive analysis of data from Kulay Kalingka Study can be used to monitor and inform improvement in cancer outcomes for Aboriginal and Torres Strait Islander peoples, including generating evidence to inform service delivery, cancer screening, participation in prevention activities and cancer awareness. Statistical analyses will involve cross-sectional and potentially longitudinal methods if multiple waves of data are collected. We will examine cancer attitudes, beliefs and experiences for Aboriginal and Torres Strait Islander peoples who have been diagnosed with cancer and those who have never been diagnosed with cancer. This descriptive analysis will include the prevalence (%, N) of participation in health promotion programmes, risk factor exposure, cancer screening participation and behaviours, and importantly cancer treatment experiences and participation in trials.
Statistical analysis is dependent on future funding. This analysis may include an examination of cancer impacts on broader health and well-being outcomes. Data from these two questionnaires will also enable robust monitoring and reporting of the Aboriginal and Torres Strait Islander NCCI over time.
Ethics and dissemination
The Kulay Kalingka Study has ethics approval from AIATSIS (reference #EO324-20220414 and REC-0121) and the Australian National University (reference #2022/465 and #2023/278). Where required, data custodian approvals and additional ethics approvals will be obtained.
Indigenous data sovereignty principles
To better understand Aboriginal and Torres Strait Islander experiences of cancer, the Kulay Kalingka Study privileges Aboriginal and Torres Strait Islander voices and build on inherent roles and responsibility of sovereignty and self-determination. To do so, the Kulay Kalingka Study follows the AIATSIS Code of Ethics for Aboriginal and Torres Strait Islander Research from the onset and throughout the life of the Study.34 In doing so and consistent with United Nations Declaration on the Rights of Indigenous Peoples, we recognise and respect Aboriginal and Torres Strait Islander peoples’ right to self-determination which is fundamental to all research.
Aboriginal and Torres Strait Islander peoples have identified that our involvement and Indigenous data sovereignty in cancer research is ‘critical to ensuring that Indigenous values and priorities underpin research’.29 We will ensure that our needs are central in improving cancer outcomes for mob. The Kulay Kalingka Study follow the Maiam nayri Wingara Indigenous Data Sovereignty Collective principles for Indigenous data sovereignty.37 These principles assert that Aboriginal and Torres Strait Islander peoples have the right to:
Exercise control of the data ecosystem including creation, development, stewardship, analysis, dissemination and infrastructure.
Data that are contextual and disaggregated (available and accessible at individual, community and First Nations levels).
Data that are relevant and empowers sustainable self-determination and effective self-governance.
Data structures that are accountable to Indigenous peoples and First Nations.
Data that are protective and respects our individual and collective interests.
The Kulay Kalingka team is Aboriginal and Torres Strait Islander designed and led, and has Aboriginal and Torres Strait Islander governance. This includes all output being bound by these principles through the application to the Mayi Kuwayu Data Governance Committee (MKDGC).38 See online supplemental file 1 for an outline of how we will address these principles.
Supplemental material
Knowledge translation
The Kulay Kalingka Study will produce knowledge translation outputs using iterative and participatory approaches which will summarise findings for Aboriginal and Torres Strait Islander communities and our stakeholders, including policy-makers and service providers. The data presented in the form of presentations will be tailored to their wants and needs, consistent with the Kulay Kalingka Study principles of Aboriginal and Torres Strait Islander sovereignty and self-determination.34 All results will be reviewed by Thiitu Tharrmay, MKDGC, and Cancer Australia before dissemination.
We will continue to work with Aboriginal and Torres Strait Islander peoples and communities, across a range of saltwater/freshwater/desert/Island groups, and in urban, regional and remote areas where possible, to develop these knowledge translation tools. We will disseminate study findings which are meaningful, accessible and culturally adapted to each Aboriginal and Torres Strait Islander community 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.
We will also engage with policymakers to coproduce knowledge translation tools. For example, this is expected to include policy briefs, factsheets and snapshots of data for presentation on the Cancer Australia website. Finally, we will produce peer reviewed publications to help disseminate results to a broader audience.
Implications
The Kulay Kalingka Study is a national, Aboriginal and Torres Strait Islander designed, governed and led study for Aboriginal and Torres Strait Islander experiences, attitudes and beliefs of cancer. The Kulay Kalingka Study will fill knowledge gaps by providing national level data on and monitor changes of cancer knowledge, understanding and experiences of diagnosis and treatment over time. The study will address the gaps in data and knowledges, including exploring attitudes, beliefs and experiences of cancer to support the health and well-being of our peoples, and for future generations. The work will have many important and lasting benefits to Aboriginal and Torres Strait Islander peoples. This includes strengthening healthcare and cancer care services, increasing understanding and awareness of cancer risk factors and how to mitigate these risks, and supporting Aboriginal and Torres Strait Islander peoples with a diagnosis of cancer to receive optimal and culturally secure care throughout their cancer journey.
Strengths and limitations
The Kulay Kalingka Study aims to improve cancer outcomes for Aboriginal and Torres Strait Islander peoples. There are a range of benefits to participants of this research, which includes self-determination by centring Aboriginal and Torres Strait Islander voices in national level data about cancer (risks, screening and treatment), and empowering Aboriginal and Torres Strait Islander people to tell their stories in a safe and culturally appropriate way.
A major strength of the study is our relational ties and Aboriginal and Torres Strait Islander community accountability. This includes Aboriginal and Torres Strait Islander research leadership, and strong relationships with communities. Further, we use knowledge translation practices (including returning data to communities), our adherence to Indigenous data sovereignty and governance principles,37 38 and our engagement with Thiitu Tharrmay and the Cancer Australia Leadership Group on Aboriginal and Torres Strait Islander Cancer Control.
Another strength is that the Kulay Kalingaka Study uses an indigenist methodology as outlined by Nurungga Professor Rigney1 by:
Resistance as the emancipatory imperative in indigenist research.
Political integrity in indigenist research.
Privileging indigenous voices in research.
While we cannot ensure that participants involved in development of the questionnaires are representative of all Aboriginal and Torres Strait Islander peoples, we are committed to engaging Aboriginal and Torres Strait Islander peoples from diverse settings, contexts and environments. This programme of work will focus on representing and encompassing Aboriginal and Torres Strait Islander experiences, attitudes and beliefs regarding cancer, from our indigenist perspectives and worldviews.
We do not anticipate that participants in the Kulay Kalingka Study will be representative of all Aboriginal and Torres Strait Islander peoples with and without a cancer diagnosis. The lack of representativeness of the Kulay Kalingaka sample does not interfere with internal comparisons (ie, identifying relationships between exposures and outcomes in the sample) or with quantifying within-person changes over time. Findings from other populations show that exposure-and-outcome associations are robust and generalisable even when the sample is not representative of the total population.39
Ethics statements
Patient consent for publication
Acknowledgments
The authors acknowledge all Aboriginal and Torres Strait Islander peoples and their continuing connection to culture, land and seas. We acknowledge the assistance and guidance of the Mayi Kuwayu Study Data Governance Committee, the Thiitu Tharrmay Aboriginal and Torres Strait Islander Reference Group, and the Cancer Australia Leadership Group on Aboriginal and Torres Strait Islander Cancer Control. We also acknowledge and thank Claire Zammit for designing the infographics included in this paper. SW (Taungurung), M-MB (Wiradjuri), LJW (Wagadagam, Gumulgal), RM (Bagumani (Modewa) Clan) and RL (Ngiyampaa/Wongaibon) also acknowledge their cultures, histories and communities.
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
Twitter @Lisa_J_Whop
SW and M-MB contributed equally.
Contributors SW and M-MB drafted the manuscript. KAT, EB and RL contributed to developing the study design and content. RM and LJW reviewed and edited the manuscript. All authors provided comments and critical revisions on the manuscript and approved the final version.
Funding This work was supported by Cancer Australia (CA-DATA-201119). M-MB (Ian Potter Foundation Scholarship, ref: 31110439); KAT (NHMRC Fellowship, ref: 1156276); LJW (NHMRC EL2 Investigator grant, ref: 2009208); EB (NHMRC Fellowship, ref: 1136128); RL (NHMRC Investigator grant, ref: 1122273).
Competing interests LJW is a member of Cancer Australia’s Leadership Group on Aboriginal and Torres Strait Islander Cancer Control and member of the Quality Committee of the National Cancer Screening Register, Telstra Health.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.