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Dallas Young, Manager, Public Health Field Research Program, James Cook University.
“I would like to begin by acknowledging the traditional owners of the greater Cairns areas, the Indinji, the Tjapukai and the Irukandjii Peoples, and would like to also acknowledge any Elders here today. I would like to thank my colleague, Yvonne Cadet-James, who developed the presentation with me, and who usually co-facilitates or co-presents with me at conferences. I would also like to thank the organising committee for inviting me to come along and talk about research today, and in particular Sonjia Carmichael for her support.
I am a member of National Medical Health Research Council’s research panel, which essentially reviews applications that are submitted for funding under the NHMRC’s grant proposal process. What has been noticeable over the last couple of years is the lack of research applications to address EH issues. As an example, for this year our Review Panel looked at 50 applications for funding, and only one of those had an EH focus. I encourage conference participants to consider developing collaborative research partnerships, and applying to funding rounds for research dollars.
Before I started I had a talk with Bully about my presentation, and the one thing that he said was to make it applicable and practical to this audience. So I guess for a lot of people out there the work that you do is a step towards undertaking research. The impact of this and producing results from your work can have an influence on policies and practice not only at a local level, but also at a national level.
Over the years there has been a lot of research undertaken in our communities into aspects of Aboriginal and Torres Strait Islander health and wellbeing. Sometimes the outcomes of this research have not always benefited our communities. Aboriginal and Torres Strait Islander research conducted in Australia today is guided by ethical principles formulated during the 1980s, and outlined in guidelines produced by the NHMRC of Australia. This presentation will provide you with information in order for you to become familiar with the research process. It will also assist you in understanding that the research journey respects our shared values, priorities, needs and aspirations, and benefits not only Aboriginal and Torres Strait Islander people, but researchers and the wider Australian population.
The two documents that I refer to throughout this presentation are the Values and Ethics Guidelines, and the Keeping Research on Track document.
At the heart of ethical practice of Aboriginal and Torres Strait Islander health research is the question of how research proposals are assessed and monitored by ethics committees, and what level of Indigenous involvement in assessment is desirable, practical and realistic. Although there has been very little Aboriginal and Torres Strait Islander involvement in ethical matters, the reality is that not all jurisdictions within Australia have established or supported this involvement. The NHMRC recognises that Aboriginal and Torres Strait Islanders are overwhelmingly the most disadvantaged group in Australia, and that the health research in this area does not appear to be contributing to an improvement in health status. The Council developed a number of initiatives to engage with Aboriginal and Torres Strait Islander peoples, and encouraged productive research. This includes a commitment to increase its investment into Indigenous health research to at least 5% of its funding, in line with the recommendations of the House of Representatives Inquiry ‘Health is Life’. This includes the development of a Centre for Clinical Excellence in Aboriginal and Torres Strait Islander health, by providing training opportunities for Indigenous scholars, a revision on ethical matters in Aboriginal and Torres Strait Islander research and the establishment of a research agenda working group known as RAWG. The NHMRC signed a five-year collaborative agreement on Indigenous health research with the Canadian Institute’s Health Research, and the Health Research Council of New Zealand. The expected outcomes include information sharing of research methodology, ethical conduct of research, community engagement, transfer of research outcomes and research capacity, as well as encouraging direct links between researchers and organisations for the development of collaborative research programs.
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The overall objective of the RAWG Road Map is to support the NHMRC to advise Aboriginal and Torres Strait Islander communities throughout Australia on the achievement and maintenance of the highest practicable standards of individual and public health, and to foster research in the interests of improving those standards.
RAWG has outlined six research themes critical to achieving substantial health gains for Aboriginal and Torres Strait Islander people.
While reasonably current data on aspects of risk, disease and deaths in Aboriginal and Torres Strait Islander peoples is available, the quality in some areas remains inadequate. Strategies for health improvement require the clarification of the role of social and other determinants of risk, disease and death.
There are two complementary areas covered in this theme. The first is the focus on research around field development, infancy, childhood and adolescence, and factors which promote resilience and lay the foundations for good health throughout life.
Within these priority areas the theme encompasses research that examines the effectiveness and efficiency of primary health care and related services, whilst recognising factors such as geographical location, community groups, service infrastructure, governance and service mix. This theme also involves the focus on specific causes of death, illness and disability, and the application of preventative diagnostic and treatment- based interventions and health services. Research on effective population health measures would be encompassed by this theme. Many mainstream health programs have an Aboriginal and Torres Strait Islander focus, yet at present there is little reliable data on the uptake of these programs by Aboriginal and Torres Strait Islander peoples, or of their effectiveness.
International research which has taken a broader approach to health status has highlighted the impact of factors such as locus of control, lack of social capital and loss and grief on our health status. Little research has been undertaken in this area in Australia. Associated with this is a need for greater understanding of EH. Other factors that may be the focus of research in this area include food supply, education, employment and economic security, transport, personal and community safety, play sport and recreation.
Gaps remain in understanding the health issues of some Aboriginal and Torres Strait Islander populations and communities. For example, there is a lack of information on the needs of urban communities, Torres Strait Islander communities, young adults and the elderly. Priority needs to be given to research that produces data and knowledge critical for health gain in these populations, or in these communities. This theme includes a focus on the range of options for building the pool and skill base of Aboriginal and Torres Strait Islander researchers. It also encompasses the development of consultation and research practice and protocols including ethical guidelines and specifying the need for mechanisms for disseminating and implementing research outcomes. It also includes a focus on the development and testing of better research tools and treatment for methodologies, for example, research into measurement and treatment of mental health in Aboriginal and Torres Strait Islander communities.
The construction of ethical relationships between Aboriginal and Torres Strait Islander peoples on the one hand and the research community on the other, must take into account the principles and values of Aboriginal and Torres Strait Islander cultures. Within the research process, failing to understand differences in values and culture may be a reckless act that jeopardizes both the ethics and the quality of the research. Working with differences in a research context takes time, care, patience and building of robust relationships. The values and ethics guidelines promote a more flexible approach, and encourage research to reposition itself to incorporate alternative perspectives and exercise judgment as to its ethical implications.
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The responsibility for maintaining trust and ethical standards cannot depend solely on rules and regulations. Trustworthiness of both research and researchers is a product of engagement between people. These guidelines are based on the importance of trust, recognition and values. The evolution of the relationships between Aboriginal and Torres Strait Islander communities and the research community has taken a number of twists and turns over the years. These guidelines articulate the meaning to Aboriginal and Torres Strait Islander peoples on each of the six values identified and agreed upon at workshops held throughout the country.
Aboriginal and Torres Strait Islander societies have sustained enormous impacts in the past, to which our cultures have responded. For long periods, both an official and popular view was that this change essentially involved the view of disconnection, of contemporary Aboriginal existence from the values and integrity of a traditional and historic society. However, to the contrary, contemporary Aboriginal and Torres Strait Islander societies draw their strength and existence from the body of knowledge, values and wisdoms that emerged from the interaction of tradition and history. When making judgments about Aboriginal and Torres Strait Islander peoples, Australia and its public institutions must acknowledge our history and bridge the difference in cultural outlooks to find a fair, respectful and ethical way forward. These guidelines, in addition to the National Statement, the authoritative statement on health research involving Aboriginal and Torres Strait Islander peoples, has the same status and authority as the National Statement.
The six core values in this document include reciprocity, respect, equality, responsibility, survival and protection, and spirit and integrity. Discussion during the development of these guidelines emphasised the relationships of these values over time and their importance to identity. An understanding that the present and the future are absolutely bound up in the past and that these cannot be separated from each other when discussing issues where key values are at stake, is shown in this diagram, by indicating that these values are present through time - past present and future.
Reciprocity involves exchange, although in the context of research this often involves unequal power relationships. In negotiating the conduct of research, Aboriginal and Torres Strait Islander communities have the right to define the benefits according to their own values and their own priorities.
Contributions to the research enterprise come in a variety of connected forms, and all should be respected. The trust, openness and engagement of participants in communities and individuals are as important as the scientific rigor of the investigation. A respectful relationship is fundamental to a sustainable research partnership. International and domestic studies have increasingly revealed a correlation between social and economic inequality, and poor health. Researchers seek to advance the elimination of inequalities. Historically, Aboriginal and Torres Strait Islander peoples have not received the benefits with them belonging principally to researchers and institutions. When engaging Aboriginal and Torres Strait Islander peoples in the research, enterprise researchers should carry responsibilities in addition to the science of their own inquiry. During 2002 the NHRMC held a series of national workshops and received submissions to consider Aboriginal and Torres Strait Islander health research issues.
Three important messages came out of this process:
1. The need to improve the way researchers work with Aboriginal and Torres Strait Islander peoples.
2. The need for developing the research capabilities of Aboriginal and Torres Strait Islander peoples.
3. The need to improve our awareness of our rights as participants in the research journey.
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‘Keeping Research on Track’ is a guide for Aboriginal and Torres Strait Islander peoples about health research processes, and was launched in 2006 by the NHMRC. It is important for Aboriginal and Torres Strait Islander peoples to know their rights in order to participate in research. This includes to commission research that meets our priority needs - to say ‘no’ up front, to say ‘yes’, to negotiate a different focus for the research, to request more time to talk about the proposal, to expect that our cultural values are respected, to have input into the research agenda, to check on the researcher’s track record, to expect that the way we do things in our communities and organisations is respected during the research process, to negotiate a formal research agreement, and to delay and stop the research. Aboriginal and Torres Strait Islander peoples have a right and indeed a responsibility to be involved in all aspects of research undertaken in our communities and our organisations.
This document will assist us to work out whether any proposed research is relevant, ethical, and appropriate by identifying our most important shared values and listing our rights to participate in all stages of the research journey. It also provides a checklist of the steps community members may follow to keep the research on track.
Research partnerships need to be developed from the very beginning. This could mean developing relationships with organisations or communities before even considering undertaking research. For the researcher it would be important to develop rapport before coming up with a proposal and applying for funding, and then seeking an organisation or a community to which to apply it.
The eight steps of the research journey will assist people who are involved in negotiations about research, to ensure that the research is relevant to communities and organisations’ needs and aspirations. Each step of the research process is discussed throughout this document, and lists key questions that may be asked in developing a research partnership.
So, in conclusion is it possible to reconcile the interests of research and researchers with the values, expectations and cultures of Aboriginal and Torres Strait Islander communities? The evidence suggests that it is. Several different models have been used successfully to build trust and recognition of cultural values and principles, while advancing the objectives of the research enterprise.
A common feature across all models is the explicit recognition and commitment to respect our cultural values and principles. The model also illustrates important aspects of accountability and transparencies standards processes and structure.
If you would like more information on the two documents about which I have spoken today, please go to the NHMRC website http://www.nhmrc.gov.au/.
You can also download the documents or request hard copies.
for further information
James Cook University
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