Engaging Aboriginal and Torres Strait Islander people in guideline development
Engagement is a relationship built on trust and integrity
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 screening video for Indigenous 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).
NHMRC requirements
The NHMRC ‘Procedures and requirements for meeting the 2011 NHMRC standard for clinical practice guidelines’ outlines the steps that guideline developers must take in order to be granted NHMRC approval of their guideline. These requirements cover all aspects of guideline development, including stakeholder involvement, evidence identification and review, public consultation and dissemination and implementation. A demonstrable understanding of the context of clinical practice and equity form a major component of these requirements.
The following mandatory requirements are specific to Aboriginal and Torres Strait Islander people:
- B.5 Issues relevant to Aboriginal and Torres Strait Islander People (such as particular risks, treatment considerations or sociocultural considerations) are identified and described.
- C.3 The population groups specified in the search strategy include Aboriginal and Torres Strait Islander People and any population subgroups that have been identified (see Requirement B.4 and B.5).
- D.11 Where evidence is identified showing that Aboriginal and Torres Strait Islander People or other population groups have specific treatment or prevention outcomes, this evidence is clearly identified and considered in the formulation of the recommendations
The following desirable requirements are specific to Aboriginal and Torres Strait Islander people:
- A.4.1 The guideline development process includes participation by representatives of Aboriginal and Torres Strait Islander People and culturally and linguistically diverse communities (as appropriate to the clinical need and context), and the processes employed to recruit, involve and support these participants are described.
- Several additional considerations are specified that relate to a demonstrable understanding of the context of clinical practice, equity and other ‘considerations’ that relate to ‘this’. For example:
- C.8.1 If gaps in the evidence are identified during the evidence review, these are described in the guideline and areas for further research are noted (e.g. there may be an absence of high quality evidence regarding a guideline topic in Aboriginal and Torres Strait Islander People), and[D.9.2 The resource implications and cost effectiveness of any recommended practice, compared with current or established practice, are explicitly stated in the text
- D.13.1 Ethical issues are considered when formulating the recommendations and any such issues identified and described.
- F.4 The developer has identified and consulted with key professional organisations (such as specialty colleges) and consumer organisations that will be involved in, or affected by, the implementation of the clinical recommendations of the guideline (e.g. Aboriginal Community Controlled Health Services etc).
NHMRC Standards
The following Standards apply to the Engaging Aboriginal and Torres Strait Islander people in guideline development module:
- 3. The guideline development group will:
- 3.1 Be composed of an appropriate mix of expertise and experience, including relevant end users.
- 5. To be focused on health and related outcomes guidelines will:
- 5.2. Address outcomes that are relevant to the guideline’s expected end users
- 5.3. Clearly define the outcomes considered to be important to the person/s who will be affected by the decision, and prioritise these outcomes.
- 6. To be evidence informed guidelines will:
- 6.2. Consider the body of evidence for each outcome (including the quality of that evidence) and other factors that influence the process of making recommendations including benefits and harms, values and preferences, resource use and acceptability.
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: 3rd edition. 2018
Centre for Remote Health CARPA Standard Treatment Manual 7th Edition 2017
National Aboriginal and Torres Strait Islander Cancer Framework (2015)
The Optimal Care Pathway for Aboriginal and Torres Strait Islander people with cancer (2018)
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
Department of Health. (2013) National Aboriginal and Torres Strait Islander Health Plan 2013-2023
Ganma (video on Knowledge Translation by The Lowitja Institute) (the Ganma story begins at 1.26)
Kanyini, a short documentary, describes the connection between Country, spirituality and wellbeing (pay to access)
Queensland Health. (2014). Aboriginal and Torres Strait Islander Patient Care Guideline
Reconciliation Australia. (2017). "Welcome to and Acknowledgement of Country"
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 Television (NITV)
First Australians (SBS)
Engagement and Research Engagement
National Disability Insurance Agency (NDIA). Aboriginal and Torres Strait Islander Engagement Strategy (NDIS. 2017)
National Health and Medical Research Council (NHMRC). (2018) Keeping Research on Track II
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 (2019). 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
Working with Aboriginal Peoples and Communities: a practice resource
References
Ball, R. (2015). 'STEM the gap: Science belongs to us mob too.' Australian Quarterly 86(1): 13-19.
Dudgeon P., Milroy H. and Walker R., Telethon Institute for Child Health Research.
Ngaanyatjarra Pitjantjatjara Yankunytjatjara Women's Council (2019) Ngangkari — Traditional Healers.
The Lowitja Institute (2021). Knowledge Translation.
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.