NACCHO Aboriginal health research:Ten key principles relevant to Aboriginal health research

Male Health Summit - Ross River Resort - July 2013

Implementing any research methodology among Indigenous Australian groups will work best when the following 10 principles are met. These principles are reflected in the many documents related to working and researching with Indigenous Australians; for example, the National Health and Medical Research Council (NHMRC) ethical guidelines for research among Aboriginal and Torres Strait Islander people. In this article, we set out these principles in one short, accessible document

Working with Indigenous communities towards research that is relevant, effective and culturally respectful

Lisa M Jamieson, Yin C Paradies, Sandra Eades, Alwin Chong, Louise Maple-Brown, Peter Morris, Ross Bailie, Alan Cass, Kaye Roberts-Thomson and Alex Brown

Picture above Remote communities Male Health Summit Ross river 2013

As published in the MJA

Writing in the Journal about Indigenous health in 2011, Sir Michael Marmot suggested that the challenge was to conduct research, and to ultimately apply findings from that research, to enable Indigenous Australians to lead more flourishing lives that they would have reason to value. As committed Indigenous health researchers in Australia, we reflect Marmot’s ideal – to provide the answers to key questions relating to health that might enable Indigenous Australians to live the lives that they would choose to live.

As a group, we have over 120 collective years experience in Indigenous health research. Over this time, particularly in recent years as ethical guidelines have come into play, there have been many examples of research done well. However, as the pool of researchers is constantly replenished, we hold persisting concerns that some emerging researchers may not be well versed in the principles of best practice regarding research among Indigenous Australians populations.

Implementing any research methodology among Indigenous Australian groups will work best when the following 10 principles are met. These principles are reflected in the many documents related to working and researching with Indigenous Australians; for example, the National Health and Medical Research Council (NHMRC) ethical guidelines for research among Aboriginal and Torres Strait Islander people. In this article, we set out these principles in one short, accessible document.

ESSENTIAL PRINCIPLES

 1.Addressing a priority health issue as determined by the community

No group is more aware of the health inequalities between Indigenous and non-Indigenous Australians than Indigenous Australians themselves. Researchers need to work in close partnership with the community so that their own objectives and ideas do not mask the community’s own priority areas. This will require both parties to learn how to work together to manage potentially conflicting agendas, including differences in priority perceptions, community politics and interpretation of findings. The communities and participants need to be engaged as equal partners in all phases of the research process with a flexible agenda responsive to broader environmental demands.

2.Conducting research within a mutually respectful partnership framework

An open and transparent relationship with key community groups is critical to the success of implementing research projects among Indigenous Australians. This can be neither rushed nor faked. Indigenous communities are more likely to embrace working with researchers with whom they have an established rapport than with someone unfamiliar, regardless of the eminence of the researchers, sophistication of the study design or amount of funding available. Researchers should ideally have a commitment to continuing to work with a given Indigenous group (especially if reasonably secure employment opportunities might be possible) following cessation of the study.

In addition, within any given community it is vital to identify key champions for the study and those who are likely to block access. The team of champions might take months or years to foster but their involvement will make an enormous difference in peoples willingness to enrol in and continue with the study. We have learnt (sometimes the hard way) the importance understanding the local “lay of the land” in terms of governance and in working hard to foster open and trusting relationships with those whose support the study’s success will rely on.

3.Capacity building is a key focus of the research partnership, with sufficient budget to support this

Investigators must have a commitment to employ Indigenous staff and provide opportunities for such staff to continue and develop their research careers if at all possible. As well as allowing capacity building of Indigenous staff, this will create substantial learning opportunities for non-Indigenous staff, this will create substantial learning opportunities for non-Indigenous personnel. Different models of employing Indigenous staff may be required in different situations, and partnering with Aboriginal controlled health services can be critical.

Many projects are underfunded. Personnel costs are high and staff turnover might be excessive, more time than anticipated might be required for community engagement, trips may need to be rescheduled, it may take much longer to recruit and unforeseen circumstances (eg, cultural – based delays to the study) are almost certainly guaranteed. It can be difficult to achieve the desired sample size when undertaking research with Indigenous Australians. These issues are not unique to Australia, with other investigations involving Indigenous populations internationally also having been abandoned due to recruiting difficulties. Researchers need to be realistic about these well documented difficulties when planning budgets.

4.Flexibility in study implementation while maintaining scientific rigour

Flexible study implementation may relate to issues such as the need to adjust the planned geographic location, modify eligibility criteria while maintaining scientific rigour, or revise the study protocol based on community feedback. In the United States, many intervention studies among the Native American population have reported no effects, when in fact the lack of results stemmed from poor implementation of the intervention rather than from shortcomings in the intervention itself.

Researchers have suggest that future interventions should “place greater emphasis on the involvement of community members and organizational leaders in the development and implementation of intervention” and that “community –based approach is key to sustainability and acceptability”.

5.Respecting communities past and present experience of research

On one level, the history of Australia’s Indigenous populations – involving forced policies of assimilation, imposed removal of children, profound and sustained social disadvantage, and dislocation from mainstream life – needs to be recognised. In the context of research Indigenous Australians past experience of involvement in research needs to be understood when conducting community consultation in order to foster support and trust. Researchers also have to be ready for communities to say “no” at any point during a study/

Finally, communities have a right to expect that if they agree to be involved in research, it will be of sufficiently high quality and rigour to generate meaningful results and change health outcomes.

Desirable principles

6.Recognising the diversity of Indigenous Australian populations

Although Australia’s Indigenous population represents a small proportion of the total population (2.6% in the 2006 Census), there is great heterogeneity among the many Indigenous groups. This diversity is not such an issue when studies are based within a localised geographic area (although even in small geographic areas the differences may be greater than appreciated), but needs to be carefully planned for when implementing research (such as national population-level surveys) that may include many different language and culturally distinct groups.

7.Ensuring extended timelines do not jeopardise projects

In our collective experience, timelines for conducting research with Australian Indigenous groups sometimes need to be extended. Reasons include delays in obtaining ethical approvals (many studies require formal approval from Aboriginal human research ethics committees, which frequently require written letters of support from key Indigenous stakeholder groups); delays and interruptions to community consultation sessions; delays to interviewing and employing local community members as staff ; unforeseen community – based events (eg, funerals community meetings, council or health service instability).

The need for longer recruitment times’ unforeseen weather events; and difficulties in securing appropriate travel and accommodation. In addition, the myriad demands placed on Indigenous communities and their members require research to “wait its turn”. Projects that have run on time and within budget have usually taken account of these challenges in the planning stages.

8.Preparing for Indigenous leadership turnover

Leadership turnover among key Indigenous stakeholder groups can be high. This occurs at both high-end governance and grassroot community levels. There is enormous, often unreasonable, pressure placed on many Indigenous Australians in leadership, both from within their own communities and from mainstream structures.

Non-Indigenous researchers would do well to anticipate this in advance rather than rely on a small number of key Indigenous leaders to promote and advocate their study. Indigenous advisory committees are invaluable in offering further advice on this issue, as are local Aboriginal ethics committees and community – controlled health organisations. Maintaining close and trusting relationships with a number of local Indigenous leaders (and recognising that these may take years to establish) may help researchers prepare for such occurrences.

9.Supporting community ownership

In the past, the rights interests and concerns of Indigenous participants were frequently ignored by non-Indigenous participants were frequently ignored by non-Indigenous researchers. We now know that the sustainability of research projects is achieved only when there has been substantive community input and ownership.

From the outset, research projects need to be directed by the relevant Indigenous communities, by forming Indigenous advisory committees where possible, and by researchers constantly reviewing their study goals ideal, membership of advisory or steering committees can place a substantial burden and expectation on the relatively small number of people who have the time, interest and skills to sit on them, If it is not possible to form such a committee, the role of Indigenous staff and Indigenous community members becomes even more critical.

10. Developing systems to facilitate partnership management in multicentre studies

Investigations involving Indigenous Australians are becoming increasingly multicentre, both within Australia and with International collaborators. Ensuring that equitable and transparent processes are in place for managing partnerships, community engagement and recruitment, ethics, intervention implementation, use of new technologies, and compliance with privacy requirements is critical for the wellbeing of both study participants and the wider research community.

CONCLUSION

These 10 principles should be considered from the initial design stage of the project, ideally when consulting with the community and writing funding applications”

This may have policy implications for funding bodies, as substantially more funding will likely be necessary to ensure that specific principles can be followed – eg, regarding capacity building (3) and extended timelines (7). Application of the principles should not affect the accurate reporting of trials using tools such as the Consolidated Standard of Reporting Trials. The principles support, and could be considered in harmony with existing NHMRC ethics guidelines.

Most of the principles have been reported before with respect to research involving marginalised peoples, Indigenous Australians, other Indigenous peoples and the general population. They should also be seen in their broad context – We believe that the 10 principles are relevant to all Indigenous health- related research. If considered, they may, in a small way, help research projects among Indigenous Australians be implemented in the most effective and culturally respectful way possible.

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NACCHO Aboriginal Health news: Diabetes is set to “bankrupt the Australian health system”,

abrown

Professor Alex Brown, head of the Aboriginal Research Unit at the South Australian Health and Medical Research Institute, said a majority of adults over 50 in some Indigenous communities will have it.

“It is probably the leading cause of preventable blindness in Aboriginal Australia,” he said.

A MASSIVE rise in diabetes is set to “bankrupt the Australian health system”, experts warned today after the release of a World Diabetes Atlas showing the looming health catastrophe.

As published in NEWS LTD

Twenty years ago, an alarming rise in the disease led to forecasts it would reach 100 million cases worldwide this year – instead it has rocked to 382 million and is on a trajectory to reach almost 600 million by 2035, or 1 in 10 people.

There will be more than five million deaths from the disease this year and the bill for care, medication and treatment will hit US$548 billion. Plus there are an estimated 175 million cases that are undiagnosed.

Release of the report ahead of the World Diabetes Congress in Melbourne next month shows 1.7 million Australians now have it, a similar number are at risk and by 2035 some 2.3 million Australians will have it.

Congress chairman Professor Paul Zimmet of the Baker IDI Heart and Diabetes Institute said it was a looming catastrophe.

“Unless we do something about it, it is going to have very severe effects on the national economy,” he said.

“Along with obesity it is the largest public health issue the world faces, with the potential to actually bankrupt the Australian health system.”

  The most common form of diabetes – Type 2, which is associated with lifestyle choices such as diet and exercise – was previously only seen in adults but now is being seen in children in Australia.

Complications can include heart disease, stroke, kidney disease, blindness, feet problems leading to amputation, sleep apnoea, and fatty liver. It is also on track to overtake alcohol as the major cause of cirrhosis of the liver.

The atlas shows South East Asia and the Western Pacific as the regions with the highest rates, with up to one in three adults in Pacific island of Tokelau having the disease.

It also shows the heavy impact the disease is having on indigenous peoples around the world as lifestyles and diet change, such as various American Indian tribes as well as Aboriginal and Torres Strait Islander people.

Professor Alex Brown, head of the Aboriginal Research Unit at the South Australian Health and Medical Research Institute, said a majority of adults over 50 in some indigenous communities will have it.

“It is probably the leading cause of preventable blindness in Aboriginal Australia,” he said.

He noted a move by Aboriginal elders in the Kimberley to revert to traditional lifestyles and diet has seen significant improvements in the disease rate but this was unlikely to be a wide-scale solution.

President of the International Diabetes Federation Sir Michael Hirst said diabetes is a disease of development.

“The misconception that diabetes is ‘a disease of the wealthy’ is still held, to the detriment of desperately needed funding to combat the pandemic,” he said.

“Today, on World Diabetes Day, we must continue to increase awareness of the importance of a healthy diet and physical activity. Crucially, environments must be created that lay the foundations for healthy living.”

NACCHO funding news: $2.4 Million awarded for Aboriginal Health Research Centre

Lisa Report TA 125

NACCHO response

Professor Ngiare Brown, (pictured above being interviewed for SBSTV last week at the NACCHO summit) Executive Manager of Research for NACCHO and a co-Chief Investigator of the new centre, says:

“This is an exciting opportunity to work in collaboration with leaders in their field. Translation health is often overlooked but it will be critical in helping to address the biggest priorities in the Indigenous health gap.

“This centre will build leadership and capacity in Aboriginal health and the community controlled sector, and will support the development of culturally relevant services that will lead to positive change,” she says.

PRESS RELEASE

The University of Adelaide has won $2.48 million to establish a new national Centre of Research Excellence, in partnership with the South Australian Health and Medical Research Institute (SAHMRI), the National Aboriginal Community Controlled Health Organisation (NACCHO) and the University of Wollongong.

The centre will use the best available evidence to prevent, manage and treat chronic disease among Indigenous people.

The funding from the National Health and Medical Research Council (NHMRC) has been awarded to the University of Adelaide’s Professor Alan Pearson AM, who is Chief Investigator of the new NHMRC Centre of Research Excellence (CRE) for Translational Research in the Management of Chronic Disease in Indigenous Populations.

“The aim of our centre is clear: to improve health outcomes among Aboriginal and Torres Strait Islander people with a chronic disease,” says Professor Pearson.

“As a population, Indigenous people have significantly poorer health than other Australians and typically die at much younger ages. We hope to save lives and improve people’s quality of life by translating science to better health practice.”

Professor Pearson has an international reputation in the field of translating evidence into policy and practice in health care. He is Head of the University of Adelaide’s School of Translational Health Science and Executive Director of the Joanna Briggs Institute.

“Our research will review existing knowledge about the prevention, management and treatment of chronic disease in Indigenous populations. Based on that information, we will conduct much-needed programs to translate and implement evidence into Indigenous health care,” Professor Pearson says.

“Importantly, to maximise outcomes, this work will be conducted in close collaboration with NACCHO and their member services.”

Professor Alex Brown, Leader of the Aboriginal Research Unit at SAHMRI and a co-Chief Investigator of the new centre, says chronic diseases such as heart disease, diabetes and kidney disease account for 80% of the life expectancy gap between Aboriginal and non-Aboriginal Australians.

“The reasons why Indigenous people suffer from high rates of chronic disease are extremely complex. Our work is aimed at making inroads into this massive problem on a clinical, policy and population level,” Professor Brown says.

Professor Ngiare Brown, Executive Manager of Research for NACCHO and a co-Chief Investigator of the new centre, says: “This is an exciting opportunity to work in collaboration with leaders in their field. Translation health is often overlooked but it will be critical in helping to address the biggest priorities in the Indigenous health gap.

“This centre will build leadership and capacity in Aboriginal health and the community controlled sector, and will support the development of culturally relevant services that will lead to positive change,” she says.

The University’s Deputy Vice-Chancellor (Research), Professor Mike Brooks, says today’s announcement is further proof of the strong research collaborations that exist in Adelaide.

“The awarding of this new Centre of Research Excellence is a major vote of confidence in the quality of research being conducted in this State, and our researchers’ ability to translate their work into real health outcomes,” Professor Brooks says.

“Congratulations to all of the partners involved in this new centre, which has the opportunity to make a significant impact on a national scale.”

Media Contacts:

Professor Alan Pearson

Head, School of Translational Health Science

Executive Director, Joanna Briggs Institute

The University of Adelaide

Phone: 08 8313 6157

Mobile: 0408 727 624

David Ellis

Media and Communications Officer

The University of Adelaide

Phone: 08 8313 5414

Mobile: 0421 612 762