The CARE DMM is designed for all data actors, from Indigenous community leaders to agency professionals, funders, publishers, and more, who are working towards strengthening Indigenous governance of Indigenous Peoples’ data through operationalizing the CARE (Collective benefit, Authority to control, Responsibility, and Ethics) Principles for Indigenous Data Governance. By sharing resources, tools, and guidance, we hope to build consistent practices and robust standards for governing Indigenous data across diverse and global data ecosystems.

Indigenous Data Sovereignty and Indigenous Data Governance are globally important for empowering Indigenous peoples and ensuring data about them and their lands is collected, managed and used in ways that respect sovereignty and self‑determination.

This FAQ explains, in clear language for health researchers, the ethical principles and practical approaches to the creation, collection, management and use of data that support Aboriginal and Torres Strait Islander Peoples
rights to govern their own data and exercise self‑determination. It also signposts key Indigenous Data Sovereignty and Indigenous Data Governance resources from leading international and national organisations.

Exploring barriers and identifying enablers for Indigenous Australians’ participating in cancer research

This presentation will explore barriers experienced by Indigenous Australians in accessing precision health research and clinical trials. In this context, we discuss cancer research, the lack of recording of identity for Indigenous participants and the initiatives being undertaken by the Australian Alliance for Indigenous Genomics to address these issues through two-way learning and key partnerships.

marra ngarrgoo, marra goori The Victorian Aboriginal Health, Medical and Wellbeing Research Accord  is an innovative framework designed to guide and govern all health and wellbeing research impacting Aboriginal and Torres Strait Islander people at the local level in Victoria, Australia.

marra ngarrgoo, marra goori brings together Victorian Aboriginal and Torres Strait Islander communities, the Victorian Government, and health and medical research organisations in Victoria to collaboratively centre Aboriginal and Torres Strait Islander people’s cultures, worldviews, belief systems, and governance at the centre of the research process.

Hei Āhuru Mōwai Māori cancer leadership is committed to building a thriving Māori cancer research community. Supporting and increasing Māori cancer research capacity is one way to address the substantial disparities experienced by Māori across the cancer pathway.

Studying can be an exciting time for Māori students and looking after their mauri, wairua, tinana, hinengaro and whānau can provide unlimited benefits to the student, the institutions and Aotearoa nui tonu. As such, we have developed these tikanga/recommendations for universities and other education and research institutions to help support Māori Masters, PhD, and Post-doctoral students during their study.

A presentation based on Our Wisdom Our Ways (OWOW) – Yindyamarra Winhanghana, a qualitative study of First Nations female carers and their experiences/journey.

Over the course of a year, Madison Shakespeare travelled Australia, yarning with others on what self-determination in cancer journeys could look like for Aboriginal and Torres Strait Islander people. With an emphasis on GI cancers, the resulting series is a seedpod of human experience and resilience, containing honest, actionable and culturally specific advice.

Seedpod of Yarns aims to develop culturally safe relationships with First Nations patients, carers, kin and community to ensure their awareness of treatment options and to facilitate their realisation of their self-determined cancer journeys – but it is also a compassionate resource for anyone and everyone who must walk one.

The ReViTALISE Project in partnership with Rumbalara Aboriginal Co-operative and Goulburn Valley Health has launched three videos on the Lotjpa Yapaneyepuk YouTube channel, created with mob, for mob. These videos aim to help improve understanding and access to cancer clinical trials for Aboriginal and Torres Strait Islander peoples.

The videos include:
* What is a clinical trial? -An animated video introducing clinical trials, presented in a culturally relevant context, emphasising family, culture and informed consent.
*Lived experience of cancer trials – A Wulli Wulli woman shares her lived experience of participating in a clinical trial
*Being seen, being heard: Yarning with health professionals about cancer trials – A resource for health professionals, highlighting the priorities of Aboriginal people living with cancer and the role of family and culture in care.

Part of The Lowitja Journal webinar series, this workshop aimed to provide a helpful and step-by-step explanation of how to strengthen your research conducted with Indigenous peoples.

Our speakers worked through the CONSIDER statement, a global guideline for strengthening reporting of health research involving Indigenous peoples, and provided examples for how to enact the statement’s best practice guidelines in your own research programs.

The AH&MRC is the voice on Aboriginal Health and the peak body who represents ACCHOs in NSW that play a vital role in addressing the needs of Aboriginal people and improving Aboriginal health outcomes.

Resources for use when submitting an ethics application. Includes templates and guidelines.

The Aboriginal and Torres Strait Islander Quality Appraisal Tool is a set of fourteen questions for appraising the quality of research in Australian settings with Aboriginal and Torres Strait Islander peoples, families and communities through an Aboriginal and Torres Strait Islander lens. Aboriginal and Torres Strait Islander peoples’ values and ethics have informed the questions in the tool with the intent to achieve appropriate, high quality and relevant health research that benefits Aboriginal and Torres Strait Islander peoples.

The Aboriginal and Torres Strait Islander Quality Appraisal Tool Companion Document provides users with guidance on how to interpret and assess research articles using the Aboriginal and Torres Strait Islander Quality Appraisal Tool.

The lack of attention to Indigenous epistemologies and, more broadly, Indigenous values in primary research, is mirrored in the standardised critical appraisal tools used to guide evidence-based practice and systematic reviews and meta-syntheses. These critical appraisal tools offer no guidance on how validity or contextual relevance should be assessed for Indigenous populations and cultural contexts. Failure to tailor the research questions, design, analysis, dissemination and knowledge translation to capture understandings that are specific to Indigenous peoples results in research of limited acceptability and benefit and potentially harms Indigenous peoples. A specific Aboriginal and Torres Strait Islander Quality Appraisal Tool is needed to address this gap.

Research reporting guidelines are increasingly commonplace and shown to improve the quality of published health research and health outcomes. Despite severe health inequities among Indigenous Peoples and the potential for research to address the causes, there is an extended legacy of health research exploiting Indigenous Peoples. This paper describes the development of the CONSolIDated critERtia for strengthening the reporting of health research involving Indigenous Peoples (CONSIDER) statement.

This resource sheet provides a list of resources for non-Indigenous evaluators and/or child and family services who need to plan, undertake, or commission an evaluation for programs that work with Aboriginal and/or Torres Strait Islander children and their families.

A self-check tool to evaluate your research project against best practice standards for Aboriginal and Torres Strait Islander Research.

There are many factors that need to be considered when working with Aboriginal and Torres Strait Islander peoples, cultures and knowledges. These resources expand upon a few key factors that need to be considered before undertaking any work in this area.

A guide to using respectful and inclusive language and terminology.

This webinar focuses on the importance of giving space to relationship building when conducting yarning methodology. Yarning was a cultural practice a long time before it became a research methodology. It is a means of knowledge sharing and can occur across many activities. The value of yarning as a research methodology is explored in this webinar, with discussion around steps to take; guidance for non-Indigenous researchers; and potential for clinical changes as a result of such research.

Indigenous Research Methodologies describe a range of principles and values developed by Indigenous peoples themselves in response to their own unique epistemologies (ways of being), ontologies (ways of thinking) and axiologies (ways of doing). Indigenous Research Methodologies, can be utilised by Indigenous researchers or by non-Indigenous researchers working with Indigenous knowledges. A key scholar in this area is Lester-Irabinna Rigney (1999) who developed a framework for “Indigenist” research methodologies building on the work of Martin Nakata (1998) who explored the concept of an Indigenous standpoint in research.

In Indigenous research you are not separate from the research you are conducting. Who you are, your viewpoint, experiences and knowledges need to be taken into account. You will need to acknowledge your standpoint. Check out this helpful short guide. Explore further guides through the links.

This resource will guide you through different Indigenous methodologies and methods. If you are anchoring yourself in an Indigenous research methodology, you will need to consider appropriate Indigenous methods to collect relevant data. If you don’t, you may have data, but you won’t be able to answer your research question. Find out more about appropriate methodologies and methods with Indigenous populations in this excellent resource.

Indigenous Data Sovereignty (IDSov) is the right that First Nations peoples have to manage the collection, ownership and use of data about them, their Country, knowledge and resources. Indigenous Data Governance is the data management practices designed to recognise IDSov in relation to collecting, using, owning, and sharing Indigenous Data. IDSov emphasises the agency of Indigenous peoples in controlling how their knowledge, and personal or sensitive information is used and accessed.

Wide range of resources, databases, indexes, finding aids and reading lists to help you with your research and to find information in the AIATSIS Collection.

This resource discusses the CARE Principles for Indigenous Data Governance, developed by the Global Indigenous Data Alliance. The CARE Principles emphasise ethical and culturally respectful data practices that prioritise Indigenous peoples’ rights, interests, and self-determination.

Hear from inspiring Indigenous health and wellness scholars, healthcare professionals, and communities sharing their stories of how they’re decolonizing health and wellness research, changing healthcare and academe along the way.

Topics of conversation cover pathways into health and wellness research, techniques and research design, funding research, past and present health and wellness projects, and ethical research protocols when involving Indigenous communities, collectives and organizations.

A short video explaining the importance of elders in the community.

Useful for considering the interactions you may conduct with Communities and Elders in approaching your research project.

Professor Linda Tuhiwai Smith shares her tremendous insights into indigenous knowledge, language revitalization, decolonizing research practices, and how to “make knowledge live.”

Professor Smith is an internationally recognized educator and researcher, and her book Decolonizing Methodologies: Research and Indigenous Peoples has been one of the most widely cited publications relating to decolonizing research practices.

She is Professor of Education and Māori Development, Pro-Vice Chancellor Māori, Dean of the School of Māori and Pacific Development and Director of Te Kotahi Research Institute, at the University of Waikato in New Zealand.

The Indigenous Research Level of Engagement Tool (IRLET) aims to provide guidance to researchers and grant review committees who are involved in or are new to Indigenous research with guidelines on how to ensure a project proposal is being planned and executed in an appropriate manner.

The IRLET Training Module offers guidance on a number of categories for researchers and reviewers to consider when shaping or reviewing a research project proposal. Categories that the IRLET encourages its users to consider are: Partnership with Indigenous Stakeholder(s); Knowledge into Practice; Strengths-based Approaches; Indigenous Knowledges and Ways of Knowing. Learners will gain the knowledge, understanding, skills, abilities, attitude, and awareness to: Recognize the history and context in which the IRLET was developed. Use the criteria by which a project should be measured. Demonstrate scoring a project to meet IRLET standards. Relate important components of Indigenous research, such as the need to use both strengths-based and trauma-informed approaches.

The Consideration Guidelines are an online tool developed by Aboriginal and Torres Strait Islander research and health leaders to help researchers, especially non-Indigenous researchers, engage respectfully and effectively with Aboriginal and Torres Strait Islander communities.

This online interactive tool is user friendly and informative.

Nulungu Research Institute is a Kimberley-based organisation of collaborating Aboriginal and non-Indigenous researchers, each with extensive practical and theoretical knowledge.

Located in Broome, Nulungu provides an Indigenous research and academic focus for the entire Notre Dame University – including the Notre Dame Fremantle and Sydney Campuses – and operates at local, regional, national and international levels. Nulungu encourages the pursuit of excellence in research through valuing community-based Indigenous knowledge.

Our research expertise across the team covers a wide range of disciplines. Nulungu focuses on the core research themes of Culture Country and Language; Transformational Education; Aboriginal Wellbeing; Sustainable Lifeways and Social Justice; and Policy, Practice and Evaluation. A key feature of Nulungu’s research approach is our collaboration with national and international academic institutions, teaching and research communities, government and industry – all within an Indigenous context.

Nulungu has demonstrated the capacity to establish and maintain successful engagement across disciplines and professional fields, secure funding from a range of sources, and complete projects of relevance and priority to Indigenous communities.

The Australian Indigenous HealthInfoNet’s mission is to contribute to improving the health of Australia’s Aboriginal and Torres Strait Islander people and assist in ‘closing the gap’ by facilitating the sharing and exchange of relevant, high-quality knowledge.

We address our mission by: undertaking research, disseminating relevant information, facilitating information exchange, providing internet and related training. We take a broad view of Aboriginal and Torres Strait Islander health, along the lines used by the National Aboriginal Health Strategy Working Party, and expanded by the National Aboriginal Community Controlled Health Organisation (NACCHO): health is not just the physical wellbeing of an individual, but the social, emotional, and cultural wellbeing of the whole community in which each individual is able to achieve their full potential as a human being thereby bringing about the total wellbeing of their community.

Lowitja Institute works for the health and wellbeing of Aboriginal and Torres Strait Islander people through high-impact quality research, knowledge exchange, and by supporting a new generation of Aboriginal and Torres Strait Islander health researchers.

Established in January 2010, we operate on key principles of Aboriginal and Torres Strait Islander leadership, a broader understanding of health that incorporates wellbeing, and the need for the work to have a clear and positive impact. While Lowitja Institute was officially established in January 2010, its history dates back to 1997 when the first Cooperative Research Centre (CRC) for Aboriginal and Tropical Health was established. Following three subsequent CRCs, Lowitja Institute became a community controlled organisation and established a membership base led by Aboriginal and Torres Strait Islander representatives in 2020.

An international network with the aims of:

• Advancing Indigenous Data Sovereignty and Governance
• Asserting Indigenous Peoples rights and interests in data
• Advocating for data for the self-determined wellbeing of Indigenous Peoples
• Reinforcing the rights to engage in decision-making in accordance with Indgenous values and collective interests.

Host of the CARE Principles for Indigneous Data Governance.

This report outlines the Indigenous Referencing Guidance for Indigenous Knowledges project undertaken by Indigenous Archives Collective (IAC) members as a research and consultation partner with CAVAL.

The report includes a preamble that sets the context of the work in both Australian academic libraries and within library and information studies nationally and internationally. It considers the intersections of library practices with Indigenous ways of knowing, being and doing. While the work is intended for use in CAVAL libraries and to support the acknowledgement of First Nations people in Victoria, it has broader application for the acknowledgement of Indigenous Knowledges nationally.

This resource is for all people involved in developing health services, policies and programs that aim to support and benefit Aboriginal and Torres Strait Islander communities. It gives guidance about using best practice co-design approaches that enable Aboriginal and Torres Strait Islander people to take the lead in determining priorities and shaping the course of action.

Co-design is a way of working in partnership with Aboriginal and Torres Strait Islander people as equals. This way of working upholds self-determination, leverages the strengths of Aboriginal and Torres Strait Islander communities and is essential to achieving better outcomes.

This Guide gives practical support to:

• Understand community-defined principles of co-design and how to put them into practice.
• Identify appropriate partners and establish effective partnerships.
• Facilitate shared decision making and Aboriginal and Torres Strait Islander leadership.
• Use respectful, culturally grounded processes throughout the design, implementation and evaluation of a project.

Hosted by Uncle Graham Atkinson, co-chair of the MACH Aboriginal Leadership Group and MACH Board Indigenous Elder Representative on 17 November 2022, this satellite event of the NHMRC Research Translation Long Weekend 2022 Symposium included speakers and panelists, the Victorian Government and researchers from across the MACH partnership.

The Guidelines Framework shows how all of the relevant research guidelines in Australia are linked and provide the framework for how researchers and participants should be working together on research with Aboriginal and Torres Strait Islander Peoples and communities. Adherence to these guidelines will be a requirement of the NHMRC funding agreement.

The AIATSIS Code respects Aboriginal and Torres Strait Islander values and worldviews, acknowledging the wisdom and diversity of Indigenous knowledge systems. When announcing the review of the AIATSIS guidelines, then AIATSIS Council Chair, Professor Michael McDaniel, said that engaging ethically means many things but ultimately it is about respect and honour.

This seminar provides an overview of important considerations for engaging Indigenous people in research, including understanding cultural differences, ethical considerations, and the importance of community consultation.