Guidelines for Guidelines

Hunt (Hunt 2013) describes engagement as a relationship built on trust and integrity: 'it is a sustained relationship between groups of people working towards shared goals…a deliberative and negotiated process, which moves beyond information giving or consultation. 

Archaeological evidence demonstrates that Aboriginal and Torres Strait Islander Peoples have been living in this land we now call Australia for at least 65,000 years. During this time communities developed sophisticated knowledge systems for managing the environment and understanding, interpreting and communicating information.These knowledge systems underpinned a thriving culture that began being dismantled from the time of colonisation (Ball 2015).

Since British colonisation, Aboriginal and Torres Strait Islander Peoples* have experienced successive waves of intergenerational trauma (Atkinson, 2013) and been extensively studied by groups who have had more power and privilege. Until recently researchers have used different knowledge systems that have systematically excluded Indigenous people from having an active voice (Laycock, Walker et al 2011). At the same time there has been simultaneous disregard — and in many cases — active suppression of Aboriginal knowledge being generated, expressed and passed on. This has led to many distorted versions of understandings ‘about’ Indigenous people that reflect non-Indigenous values, beliefs and prejudices (Laycock, Walker et al 2011).

Many of these distorted perceptions have led to a dominant ‘deficit discourse’ that represents people or groups in terms of deficiency, absence, lack or failure. This has happened particularly within the health sector (Fogarty, Lovell et al 2018).

Additionally, holistic Aboriginal and Torres Strait Islander understandings of health and wellbeing are not often reflected in existing research:

Aboriginal health does not just mean the physical wellbeing of an individual, but refers to the social, emotional, and cultural wellbeing of the whole community. For Aboriginal people this is seen in terms of the whole-life-view. Health care services should strive to achieve the state where every individual is able to achieve their full potential as human beings, and must bring about the total wellbeing of their communities.NACCHO, quoted in Gee, Dudgeon et al 2014

Aboriginal and Torres Strait Islander Peoples and communities each have their own established and respected values and protocols, and unique ways of expressing their different values. Figure 1 outlines six core values identified as being important to all Aboriginal and Torres Strait Islander Peoples: spirit and integrity, cultural continuity, equity, reciprocity, respect, and responsibility.

Sourced from: Ethical conduct in research with Aboriginal and Torres Strait Islander Peoples and communities: Guidelines for researchers and stakeholders 2018 and Keeping research on track II 2018.

This has important implications for guideline developers who are responsible for developing the guidelines in a way that empowers Aboriginal and Torres Strait Islander Peoples, through ownership of the guideline development process, by:

• establishing a development group that can represent and respectfully discuss a variety of Aboriginal and Torres Strait Islander worldviews, values and preferences when considering and making deliberations about the evidence
• ensuring these voices are demonstrated and acknowledged in the guideline
• designing and undertaking genuine engagement activities with Aboriginal and Torres Strait Islander people, and relevant health organisations and communities, throughout the development process.

The objective of this module is to give practical advice to guideline developers about how Aboriginal and Torres Strait Islander people need to be involved in the development of guidelines about health issues that impact their communities. This module should be read together with the Equity, Consumer involvement, Engaging stakeholders, and Guideline development group modules. The module also supports NHMRC resources that have been developed for the research sector: Keeping research on track II, Ethical conduct in research with Aboriginal and Torres Strait Islander Peoples and communities and Road map 3.

What to do

Before engaging with Aboriginal and Torres Strait Islander communities it is worthwhile taking time to reflect on your own values, principles and beliefs; and to understand the way our shared history impacts on relationships between Aboriginal and Torres Strait Islander and non-Indigenous Australians today.

A useful concept to describe a genuine two-way knowledge sharing is embodied in the Yolŋu metaphor of Ganma. Ganma is a Yolŋu word for a lagoon where saltwater meets fresh and the new knowledge that results from this blending, without the loss of history or integrity in the process (Laycock, Walker et al. 2011). It is an important process to recognise during interactions across the lifecycle of guideline development.

1. Consider whether the guideline topic is a priority issue and/or has specific implications for Aboriginal and Torres Strait Islander Peoples

If initial scoping investigations and consultation with peak bodies suggest the topic has specific implications for Aboriginal and Torres Strait Islander Peoples — for example, implications related to achieving equity of health outcomes — NHMRC suggests appointing an Aboriginal and/or Torres Strait Islander person as the chair or co-chair of the guideline development group. This is in addition to other Aboriginal and Torres Strait Islander representatives. A general principle should be - the greater the implications for a specific group, the greater the need for engagement, involvement and leadership from that group (see Case study 1 in the downloadable attachment).

If you are developing guidelines about a general health issue that may also impact Aboriginal and Torres Strait Islander Peoples, then at least two Aboriginal and Torres Strait Islander representatives should be included on the development group. Doing this makes it easier for members of a non-dominant group to have a voice.

Some checklists may help determine whether you need to target your guideline for Aboriginal and Torres Strait Islander Peoples or whether you might want to frame it around equity-sensitive questions (Welch 2017, Akl 2017). These will be important to consider at the beginning of the guideline development process as they may have implications for the selection of the chair or guideline development group members.

2. Scope relevant issues for Aboriginal and Torres Strait Islander Peoples

NHMRC asks Australian guideline developers to ensure that issues relevant to Aboriginal and Torres Strait Islander Peoples — such as particular risks, treatment considerations or sociocultural considerations — are identified and described.

There are a number of Australian resources available to help you scope relevant issues and determine priorities including:

• The Australian Bureau of Statistics and the Australian Institute for Health and Welfare provide data on the health of Indigenous Australians, against national key performance indicators (nKPIs)
• The Lowitja Institute has developed search aids to help explicitly identify studies involving Aboriginal and Torres Strait Islander Peoples
• The Cochrane Library’s special collection on Indigenous health
• You can also consult with a librarian about how you might capture studies related to Aboriginal and Torres Strait Islander Peoples in your search.

It is important for guideline developers to note that relevant Aboriginal and Torres Strait Islander perspectives and worldviews may not be included in the academic literature. Think critically when exploring data or examining results such as whether Aboriginal and Torres Strait Islander people have been part of the data collection or design of studies, or how the data sets were informed.

3. Start a positive conversation

Engagement is undertaken with an understanding of the historical, cultural and social complexity of specific local or regional contexts (Hunt 2013). Cultural security, safety and awareness are essential for working effectively with communities (Coffin, Drysdale et al. 2008) (Alcohol and Drug Foundation) and providing a culturally safe environment is critical.

Hurried, one-off consultations that are organised without direct input from communities and through community structures, do not work (Hunt 2013). Relationships take time to develop and so it is important to start building them from the beginning of the guideline project, and to maintain them throughout the process. It is important that Aboriginal and Torres Strait Islander representatives lead the conversation and focus on respectful and deep listening (Dadirri) (West, 2012).

It is important to use a ‘strengths-based’ lens in discussions recognise the resilience and assets of a community — knowledge, skills, networks, extended family and cultural identity. A strengths-based lens also incorporates a holistic approach to wellbeing; the social determinants of ‘good health’; as well as protective factors (Fogarty, Lovell et al. 2018).

4. Seek Aboriginal and Torres Strait Islander representatives for the guideline development group

Recognising the diversity of communities is an important consideration for guideline developers when seeking representatives for the guideline development group. This includes recognising diversity and differences in urban, rural or remote living, gender, class, language, sexuality and disability.

Although it is recommended that the guideline development group has at least two Aboriginal and Torres Strait Islander people as members, they cannot be expected to represent the views of all Aboriginal and Torres Strait Islander Peoples. Other mechanisms may be needed such as establishing an expert advisory committee to specifically address issues relevant to Aboriginal and Torres Strait Islander Peoples (see Case study 2 Clinical Practice Guidelines: Pregnancy Care 2018 in the downloadable attachment).

Useful organisations to approach for potential representatives could include:

• National Community Controlled Health Organisation (NACCHO) — the peak body for Aboriginal Community Controlled Organisations (ACCHOs) and Aboriginal Medical Services (AMS)
• Academic institutions, university groups or Indigenous research collectives — representatives from these organisations will provide input on research and methodological considerations
• Professional organisations that represent Aboriginal and Torres Strait Islander health workers or general practitioners, such as CATSINAM (Congress of Aboriginal and Torres Strait Islander Nurses and Midwives), the Australian Indigenous Doctors’ Association, and Indigenous Allied Health Australia
• State and territory Aboriginal health units and associated advisory bodies, such as the Victorian Advisory Council for Koori Health (VACKH) in Victoria.

Ensuring that all representatives of a guideline development group feel comfortable and supported to present their views is critical to its functioning. It is important to recognise that styles of communication may be different from dominant culture communication styles, and to ensure that a culturally safe environment is provided for the group.

The Guideline development group module has more information about asking organisations to nominate a representative, preparing group members for their role and compensating representatives for their time and efforts.

5. Engage respectfully with communities and build relationships

Because there are structured knowledge systems around how Aboriginal and Torres Strait Islander knowledge is passed on, seeking community views must be done with the permission from community knowledge-holders (see the Useful Resources section below for information to start this process).

There are often local protocols to consider when engaging with Aboriginal and Torres Strait Islander communities including different kinship relationships and the laws governing social interactions. Take the time to learn about local history and traditions including traditional names for the lands and languages and the local families. Local Aboriginal community-controlled organisations (or Aboriginal Medical Services) can also be contacted to ask about local protocols and how to follow them. It is important to engage key people in communities such as Elders and community leaders in the early stages, and respect their advice throughout the process.

NACCHO and its state affiliates, or state government Aboriginal and Torres Strait Islander health or policy units can provide advice early in the development process on communities or health centres that could be involved in any engagement process you undertake. Any need for an ethics application will also need to be made at this early stage.

It will also be critically important that correct and formal processes to attribute the source of the knowledge are adhered to and respected.

6. Allow adequate time and resources

Specific engagement activities may require additional time and resources and will need to be factored into the project’s budget and timelines (see the Project planning, Consumer involvement and Engaging stakeholders modules). These activities could be very important to assure the successful uptake of the guideline, but must be planned for and undertaken appropriately.

Because Aboriginal and Torres Strait Islander communities are diverse, understanding the views of communities is likely to have direct implications on timing and resourcing. For example, seeking the views of community members may involve travel to remote regions. Or if you are working with people whose first language is not English, securing a qualified interpreter will be essential, but may be challenging as qualified interpreter services for some Aboriginal languages are scarce. These activities need to be incorporated into your budget and project plan.

7. Consider how you can communicate your recommendations effectively

Research translation strategies should consider the diversity of Aboriginal and Torres Strait Islander Peoples, including communities living in urban or remote areas, varying levels of English or differing levels of access to technology. In partnership with Aboriginal and Torres Strait Islander community or health care representatives, it is important to find ways to translate recommendations into culturally accessible material that can be used in different health settings such as primary health care and community settings or tertiary settings.

Examples of communication options can take the form of printed materials, videos, podcasts and apps:

• Case studies — strengths-based approaches, which include a case study of the Stay Strong app devised by the Menzies School of Health Research and Queensland University of Technology. The app allows practitioners and clients to work together to identify strengths and set achievable goals
• Asthma flip chart — Menzies School of Health Research
• Indigenous guide to healthy eating Poster
• Cancer Council Victoria Aboriginal resources including printed material and videos
• Indigenous health hip-hop videos
• National bowel cancer screening program videos specifically for Aboriginal and Torres Strait Islander Peoples
• Cervical screening for Aboriginal women video (Cancer NSW)
• Cancer Education Video for Aboriginal and Torres Strait Islander Peoples (Cancer Council WA)
• Rethink Sugary Drink videos
• Tackling Indigenous Smoking videos
• The Royal Australian College of General Practitioners (RACGP) guidelines — a podcast series
• Condoman and Lubelicious — a health promotion campaign on sexually transmitted infections
• Swimming the River — a video about living in non-traditional societies (Wunan Community, Ceduna Aboriginal Corporation (English and Pitjantjatjara versions).
• Coronavirus public health videos about how to minimise the spread of infection in Westside Kriol and Eastside Kriol

Where feasible, the ‘voices’ of Aboriginal and Torres Strait Islander Peoples consulted in the development of the guideline should be heard. This can be through inclusion of quotes, case studies, interviews or formal recognition of who was consulted during the guideline development process. An example of this is Kidney Health Australia’s (KHA) yarning consultations.

8. Share examples of successful guideline development activities

It is important to celebrate success and share the many positive and successful initiatives in Indigenous Health at national levels (for example the National Aboriginal and Torres Strait Islander Cancer Framework (2015)) and at local levels (for example Success stories in Indigenous Health). This helps to build knowledge, inspire others and counteract the prevailing deficit discourse.

Sharing the results with other communities, organisations, policymakers and funding bodies may be done in many ways: through community meetings, stakeholder meetings, conference presentations, radio interviews, media articles and publications in journals.

The Central Australian Rural Practitioners Association's (CARPA) Remote Primary Health Care Manuals are examples of advice developed for remote communities by practicing remote health clinicians, using a ‘by the user for the user’ model. CARPA have developed a women’s business module that is a ‘Standard Treatment Manual for Women’s Business’.

Since 2002, NHMRC, the Canadian Institutes of Health Research (CIHR), and the Health Research Council of New Zealand (HRC) have been signatories to a tripartite agreement to improve Indigenous Peoples’ health. The Agreement commits the three agencies to working to improve the health of Indigenous Peoples through the sharing of best-practice, information, and expertise. The 2017 Tripartite Agreement intends to:

• strengthen the capacity and capability of Indigenous health and medical researchers
• use international research initiatives and calls for research to encourage international collaboration on health and research issues of relevance to Indigenous populations
• agree on research priorities of mutual and shared national priority and refresh these during the term of the Agreement
• support a range of actions that furthers our understanding of our Indigenous Peoples’ culture, health or research experiences and approaches to health and wellness.

Building up best-practice, easily accessible evidence that can be modified to suit the local context is essential for organisations working to address health issues amongst their communities.

^*Throughout this module, the word ‘Peoples’ is used when specifically referring to Aboriginal and Torres Strait Islander groups, and the word ‘people’ is used when referring to Aboriginal and Torres Strait Islander individuals. As these are the preferred terms, other terms such as ‘First Nations’ and ‘First Peoples’ will not be used in this guideline. When quoting from other sources or referencing published works, the original usage in the source is retained. (For more information see Keeping research on track II 2018).

Useful resources

Guidelines

Kidney Health Australia CARI Guidelines (Chronic Kidney Disease, Dialysis, Transplant Guidelines)

NHMRC. Consensus-Based Clinical Guideline for the Management of Volatile Substance Use in Australia

Department of Health. Pregnancy care guidelines. 2019

Royal Australian College of General Practitioners. National Guide to a preventative health assessment for Aboriginal and Torres Strait Islander people: 4^th edition. 2024

Centre for Remote Health CARPA Standard Treatment Manual 8th Edition 2022, reprinted 2025

National Aboriginal and Torres Strait Islander Cancer Framework (2015)

The Optimal Care Pathway for Aboriginal and Torres Strait Islander people with cancer (2024)

Organisations

Australian Indigenous Psychologists’ Association

SNAICC — peak body representing Aboriginal and Torres Strait Islander children

Public Health Association of Australia (Special Interest Group on health issues relating to Aboriginal and Torres Strait Islander People)

Perinatal Society of Australia and New Zealand

POCHE Indigenous Health Network

Central Australian Academic Health Science Network — a partnership of health services, health/medical research organisations and educational institutions in Central Australia

Background Reading — History, Culture, Spirituality, Health and Wellbeing

Atkinson, J. (2013). Trauma-informed services and trauma-specific care for Indigenous Australian children, Resource sheet no.21. Closing the Gap Clearing House, Australian Institute of Family Studies

Australian Institute of Health and Welfare (2018). Aboriginal and Torres Strait Islander Stolen Generations aged 50 and over

Australian Institute of Health and Welfare and Healing Foundation (2018). Aboriginal and Torres Strait Islander Stolen Generations and Descendants — Numbers, demographic characteristics and selected outcomes

Department of Health. (2013) National Aboriginal and Torres Strait Islander Health Plan 2013-2023

Dudgeon P., Milroy H. and Walker R. (2014) Working Together: Aboriginal and Torres Strait Islander Mental Health and Wellbeing Principles and Practice, The Kids Research Institute Australia

Dudgeon, P., M. Wright, et al. (2014). Aboriginal Social, Cultural and Historical Contexts. Working Together: Aboriginal and Torres Strait Islander Mental Health and Wellbeing Principles and Practice, The Kids Research Institute Australia

Kanyini, a short documentary, describes the connection between Country, spirituality and wellbeing (pay to access)

Laycock, A., D. Walker, et al. (2011). Researching Indigenous health; a practical guide for researchers, The Lowitja Institute: 292

McKendrick, J., R. Brooks, et al. (n.d.). Aboriginal and Torres Strait Islander Healing Programs. A Literature Review, Healing Foundation

National Association of Aboriginal and Torres Strait Islander Health Worker Association (NATSIHWA). (2016). Cultural Safety Framework

National Safety and Quality Health Service Standards (NSQHS). (2017) User Guide for Aboriginal and Torres Strait Islander Health

Parker, R. and H. Milroy (2014). Aboriginal and Torres Strait Islander Mental Health: An Overview. Working Together: Aboriginal and Torres Strait Islander Mental Health and Wellbeing Principles and Practice, The Kids Research Institute Australia

Queensland Health. (2014). Aboriginal and Torres Strait Islander Patient Care Guideline

Reconciliation Australia. (2017). "Welcome to and Acknowledgement of Country"

Victorian Aboriginal Community Controlled Organisation (VACCHO). Cultural Safety Services

Getting it right: partnerships for change, describes Aboriginal and Torres Strait Islander knowledges and how different these systems of knowledge (or Ailan Kastom — Island Custom — in the Torres Strait) are to a western framework of understanding (Zubrzycki, Green et al. 2014).

Australian Indigenous HealthInfoNet (Includes a list of Cultural security, safety and awareness courses)

National Indigenous Times

Koori Mail

National Indigenous Television (NITV) 

First Australians (SBS)

Engagement and Research Engagement

Aboriginal Affairs NSW. (2017). Transforming the relationship between Aboriginal Peoples and the NSW Government. Research Agenda 2018-2023

Australian Institute of Aboriginal and Torres Strait Islander Studies (AIATSIS). (2012) Guidelines for ethical research in Australian Indigenous Studies

Australian Commission on Safety and Quality in Healthcare (ACSQH). (2017) Consumer Health Information Needs and Preferences: Perspectives of culturally and linguistically diverse and Aboriginal and Torres Strait Islander people

Bainbridge, R. et al. (2015) ‘Cultural competency in the delivery of health services for Indigenous people’, Issues Paper No. 13, Closing the Gap Clearing House, Australian Institute of Family Studies

Heckenburg, S. (2019) ‘Cultural safety in Indigenous Research’ (both a presentation and paper that discuss the intersection of research and the long-held knowledges of communities, as well as the importance of cultural safety)

Hunt, J. (2013). Engaging with Indigenous Australia—exploring conditions for effective relationships with Aboriginal and Torres Strait Islander communities. Australian Institute of Family Studies: 53

National Disability Insurance Agency (NDIA). Aboriginal and Torres Strait Islander Engagement Strategy (NDIS. 2017)

National Health and Medical Research Council (NHMRC). (2018) Road Map 3: A strategic framework for improving Aboriginal and Torres Strait Islander health through research

National Health and Medical Research Council (NHMRC). (2018) Keeping Research on Track II

National Health and Medical Research Council (NHMRC). (2018) Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research

Royal Australian College of General Practitioners (RACGP)  An introduction to Aboriginal and Torres Strait Islander health cultural protocols and perspectives (RACGP and NACCHO. 2012)

The Lowitja Institute (2021). Knowledge Translation

QLD Department of Aboriginal and Torres Strait Islander Policy and Development. (1998)

South Australia Health. (n.d.) Aboriginal Community and Consumer Engagement Strategy

Western Australia Department of Health. (2015). Implementation Guide for the WA Aboriginal Health and Wellbeing Framework

Working with Aboriginal Peoples and Communities: a practice resource

References

Alcohol and Drug Foundation (n.d.). Creating partnerships: a guide for Community Drug Action Teams and Aboriginal Community Controlled Health Organisations.  

Australian Health Ministers' Advisory Council (AHMAC) (2004) AHMAC Cultural Respect Framework for Aboriginal and Torres Strait Islander Health, 2004–2009. Adelaide: SA Dept Health.

Atkinson, J. (2013). Trauma-informed services and trauma-specific care for Indigenous Australian children, Resource sheet no.21. Closing the Gap Clearing House, Australian Institute of Family Studies

Ball, R. (2015). 'STEM the gap: Science belongs to us mob too.' Australian Quarterly 86(1): 13-19. 

Coffin, J., M. Drysdale, et al. (2008) Ways forward in Indigenous health. A text book of Australian rural health. S.-T. Liaw and S. Kilpatrick. Canberra, Australian Rural Health Education Network.  

Fogarty, Lovell, et al. (2018). Deficit discourse and strengths-based approaches — changing the narrative of Aboriginal and Torres Strait Islander health and wellbeing, Australian National University. 

Gee G., Dudgeon P., et al. (2014). Aboriginal and Torres Strait Islander social and emotional wellbeing. Working Together: Aboriginal and Torres Strait Islander mental health and wellbeing principles and practice. The Kids Research Institute.

Dudgeon P., Milroy H. and Walker R. (2014) Working Together: Aboriginal and Torres Strait Islander Mental Health and Wellbeing Principles and Practice, The Kids Research Institute Australia.

Hunt, J. (2013). Engaging with Indigenous Australia—exploring conditions for effective relationships with Aboriginal and Torres Strait Islander communities. Australian Institute of Family Studies: 53.

Laycock, Walker, et al. (2011). Researching Indigenous health — a practical guide for researchers, The Lowitja Institute: 292.

National Disability Insurance Scheme (NDIS). (2017). Aboriginal and Torres Strait Islander Engagement Strategy.

Ngaanyatjarra Pitjantjatjara Yankunytjatjara Women's Council (2019) Ngangkari — Traditional Healers.

NSW Department of Community Services. (2009). Working with Aboriginal People and Communities: a practice resource.

Royal Australian College of General Practitioners and National Aboriginal Community Controlled Health Organisation. (2012). An introduction to Aboriginal and Torres Strait Islander health cultural protocols and perspectives.

The Lowitja Institute (2021). Knowledge Translation.

West R, Stewart L, Foster K, Usher K. Through a critical lens: indigenist research and the dadirri method. Qual Health Res. 2012 Nov;22(11):1582-90. doi: 10.1177/1049732312457596. Epub 2012 Aug 31. Erratum in: Qual Health Res. 2013 Dec;23(12):1708. PMID: 22941921.

Zubrzycki, J., S. Green, et al. (2014). Getting it right: creating partnerships for change. Integrating Aboriginal and Torres Strait Islander knowledges in social work education and practice. Teaching and learning framework, Australian Government Office for Learning and Teaching and Australian Catholic University.

Acknowledgements

NHMRC would like to acknowledge and thank Associate Professor Catherine Chamberlain, Associate Professor Yvette Roe and Professor Jonathan Craig for their contribution as editors to the development of this module.

NHMRC also acknowledges the valuable input from its Principal Committee Indigenous Caucus (PCIC): Professor Sandra Eades, Professor Yvonne Cadet-James, Dr John Gilroy, Associate Professor Dan McAullay, Dr Odette Pearson, Associate Professor Yvette Roe, Dr Sean Taylor and Dr Laura Thompson.