With community involvement, research can be a powerful tool for closing the gap in Indigenous health disparity
Now, in the first decades of a new millennium, it is exciting and energising to find so many voices and forums converging to provide new perspectives on knowledge. At the Lowitja Institute, Australia’s National Institute for Aboriginal and Torres Strait Islander Health Research, we see this as a unique opportunity to achieve positive, lasting change in the health and wellbeing of Australia’s first peoples.
The Lowitja Institute uses research as a powerful tool to generate synergies between the voices and knowledge of Indigenous and non-Indigenous people. To do this effectively, we employ methods and approaches that were first developed at the Cooperative Research Centre (CRC) for Aboriginal and Tropical Health and refined over 15 years through its successor CRCs.
Described by some as the newest national community-controlled health organisation in Australia, until 2014, the Lowitja Institute is hosting the CRC for Aboriginal and Torres Strait Islander Health and managing a range of funded projects across Australia. Additionally, the Lowitja Institute has a role and a responsibility to build a national strategic research agenda that incorporates the successes delivered through the CRC model, engages with new partners and clients, and expands our presence across Australia without compromising the quality of research for which the organisation is known.
It is both an honour and a challenge to implement this research agenda with Aboriginal and Torres Strait Islander health leaders Dr Lowitja O’Donoghue, Ms Pat Anderson and Professor Ian Anderson. We are supported in this by our 12 national partners, which include community-controlled health services, state, territory and federal government departments, and academic research institutions (see http://www.lowitja.org.au/crcatsih-participants for details).
Health professionals are well aware that, despite all the research and the medical interventions spanning decades, improvements — where they occur — are incremental and trend up at a slower rate than for non-Indigenous Australians. For example, while the most recent figures show life expectancy for Aboriginal and Torres Strait Islander peoples is improving, so is the life expectancy of other Australians,1 meaning that the ideal of closing the life expectancy gap within a generation is, in effect, an ever-receding target.
Clearly, if it was just a question of implementing effective medical interventions, there would be no life-expectancy gap. Australian health professionals are acknowledged as being among the best in the world and we have, by world standards, a comprehensive, well resourced and well funded public health system. Something else is going on.
As Australia’s only Aboriginal and Torres Strait Islander-controlled pure health research organisation, the Lowitja Institute is focused on precisely this conundrum. A growing body of research tells us that, in order to nurture the physical body, we must also bolster the social, emotional and spiritual wellbeing of people who have been adversely affected by over 200 years of colonisation, dispossession and marginalisation.2,3 Other research shows that having Aboriginal and Torres Strait Islander peoples involved in all aspects of research and health infrastructure is crucial to success.4,5 In other words, a doctor can heal broken bones, but Indigenous peoples need to be engaged in creating the diversity of choices and responses to issues affecting their lives; issues that remain well beyond the reach of the surgeon’s scalpel.
While the Northern Territory National Emergency Response has highlighted the appalling health and living conditions of Aboriginal people in remote areas, the lack of social capital, amenities and health infrastructure is only part of the story. For even when Aboriginal and Torres Strait Islander peoples live in well resourced urban and regional areas, as most now do, their health and wellbeing is still, on average, substantially worse than that of their non-Indigenous neighbours on the other side of the fence.6
How do we change this? For one thing, we need to respect the information and knowledge systems that Aboriginal and Torres Strait Islander peoples live with, and ensure that we invest in safe spaces where this information and knowledge can be brought to the fore. Using culture-centred research methodologies and strategies is important at the Lowitja Institute, as is building Aboriginal and Torres Strait Islander peoples’ ability to trust and engage with the health system, the higher education system and with society more generally.
It is also essential that we continue to bolster Aboriginal and Torres Strait Islander participation at all levels of the health and health research sectors. If we boost the numbers of Aboriginal and Torres Strait Islander health professionals and researchers, and if we facilitate and fund health research that matches the priorities of Australia’s first peoples, we will be in a far better position to shift the fundamentals.
These ideals have been at our core from the moment we started our journey back in 1997 as the CRC for Aboriginal and Tropical Health. Like all pioneering ventures we had some false starts, but by the time we won funding for our second iteration as the CRC for Aboriginal Health (CRCAH) in 2003, we had developed a much better idea of what research we wanted to deliver. We had also worked out how best to build the involvement of, and investment from, Aboriginal and Torres Strait Islander peoples in our own health outcomes and in our own health discourses.
In particular, we developed a research philosophy we call the Facilitated Development Approach (FDA), in which the CRCAH worked with its partners in the Aboriginal and Torres Strait Islander health sector to identify areas where research could make a real difference, then commissioned that research. Using the FDA, Aboriginal and Torres Strait Islander voices had a strong input at each step of the research process.
This contrasts with the conventional way in which research has been carried out, where the researcher identifies the priorities — a “top-down” approach. All too often, this has meant that the interests of researchers do not coincide with the needs of Aboriginal and Torres Strait Islander communities.
The underpinning principle of the FDA research model is that the more the users of research — Aboriginal and Torres Strait Islander organisations, individuals, governments and other service providers — are involved from the beginning, the more likely it is that research projects will result in findings being used by the Indigenous health sector. And by increasing the amount of Aboriginal and Torres Strait Islander involvement in research programs at all levels, the FDA increases the amount of directly relevant health knowledge flowing through to communities.
This approach has proved highly successful, as shown by the outcomes of research projects that have led to improvements in the way many hospitals liaise with Aboriginal and Torres Strait Islander patients;7,8 improvements in the management of Aboriginal community-controlled health organisations;9 more closely targeted interventions aimed at the underlying causes of ill health, such as scabies infestations and smoking;10,11 and a growing awareness of the inefficiency of current funding arrangements for Aboriginal community-controlled health organisations.12 In fact, this approach has been so successful that the CRCAH is one of only four CRCs ever to succeed in winning a third round of federal funding.
The Institute commenced operations in January 2010 and has been established as a not-for-profit company independent of government and other centres of health and policy administration. The principle of strong Aboriginal and Torres Strait Islander leadership at all levels is central to our identity, with a majority presence at Board level and in most executive positions.
Our widely admired and respected patron, Dr Lowitja O’Donoghue (AC, CBE, DSG), has not only given the Institute her name but also a clear charter for how she wants the Institute to achieve its aims. It can be summarised as follows:
Real Aboriginal and Torres Strait Islander leadership.
Full involvement from Aboriginal and Torres Strait Islander individuals and organisations in the initiation, design and implementation of research.
Building Aboriginal and Torres Strait Islander participation at all levels of the health system.
Mentoring and support for Aboriginal and Torres Strait Islander health workers.
Wide dissemination of research findings to all research users.
Strong engagement with government and private enterprise, but without compromising core principles.
Guided by these principles under the research leadership of Professor Ian Anderson, the Lowitja Institute’s research effort has a tight focus on driving change in areas where, for a relatively small investment, substantial gains can be achieved.
The first of our three research program areas is Healthy Start, Healthy Life, which aims to make sure that primary health care and health-related services are able to access and use innovations that will help them provide the best-quality care to Aboriginal and Torres Strait Islander peoples. The research supports the delivery of primary care that encourages a long, healthy life through reducing risk associated with tobacco consumption, obesity and diet; improved early detection and effective management of chronic diseases; and improved maternal and child health outcomes.
The second program is Healthy Communities and Settings, which addresses health through a community and family focus and by ensuring that health promotion for Aboriginal and Torres Strait Islander peoples includes innovations at the broader social level. An individual’s health and wellbeing is strongly associated with the wellbeing and resilience of the communities in which they live, and improvements in individual health are more likely to be sustained over the long term when the social and physical environment is positive and supportive.
Our third research program area is Enabling Policy and Systems, which examines the fundamental constraints and challenges that contribute to poor performance in Aboriginal and Torres Strait Islander health policy and programs. The research aims to develop knowledge and evaluate tools and resources that will enable research users to reform health system policy and administration, and improve capacity to implement programs effectively.
Currently, eight research projects are underway across our three program areas, with many more in the pipeline. The support we provide can include both financial and facilitation assistance, by ensuring a strong Aboriginal and Torres Strait Islander presence in all project leadership teams and that the research is appropriately and widely communicated. Capacity-building initiatives are embedded within all projects, providing support to students and budding researchers through collaborations with some of Australia’s leading educational and training organisations. We also have a strong foundation built on partnerships with other organisations right across the health sector, especially through Congress Lowitja, our principal stakeholder body, which meets biennially (http://www.lowitja.org.au/congress-lowitja).
By June 2014, it is our intention to be self-funded so that we can continue our work on a permanent basis without the disruption and uncertainty of relying on short-term grant cycles. This will be no easy task, but we are up for it. In our favour is the ever-strengthening, national, cross-party consensus that closing the gap in Aboriginal and Torres Strait Islander health disadvantage is vital to Australia’s national interest, and will take at least a generation.
Wise people know the journey of a thousand miles begins with a single step. At the Lowitja Institute we have taken that step — and we urge all those with a commitment to ensuring the good health and wellbeing of Australia’s first peoples to join us on our journey.
Provenance: Commissioned; not externally peer reviewed.
- 1. Closing the Gap. Prime Minister’s report 2011. Canberra: Commonwealth of Australia, 2011: 12.
- 2. Kelly K, Dudgeon P, Gee G, Glaskin B. Living on the edge: social and emotional wellbeing and risk and protective factors for serious psychological distress among Aboriginal and Torres Strait Islander People. (Discussion Paper No. 10.) Darwin: Cooperative Research Centre for Aboriginal Health, 2009.
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- 11. Centre for Excellence in Indigenous Tobacco Control. Indigenous tobacco control in Australia: everybody’s business. National Indigenous Tobacco Control Research roundtable report. Brisbane; 2008; May 23. Melbourne: CEITC, University of Melbourne, 2008.
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