Not only is Indigenous health in Australia poor,1-4 "there is widespread agreement that knowledge about the health status of the Aboriginal population is inadequate".5 Some Indigenous health research has been of immense use in designing and evaluating interventions which have improved the health status of Indigenous people, especially at the local level.6,7 Consequently, high-quality, proactive, participatory research is needed.8,9
Because there are few Indigenous healthcare professionals and researchers in Australia, non-Indigenous researchers are involved in Indigenous research. Ensuring these researchers work in culturally appropriate and non-exploitative ways is a key concern.2,10,11 This article documents an approach that developed a partnership between researchers and Koorie communities in parts of northern Victoria and southern New South Wales. It extends previous guidelines about general research issues (cultural beliefs, language, privacy and questioning approaches)12,13 by describing how community research has been appropriately undertaken. This is more innovative, comprehensive and in addition to agreements between specific Indigenous organisations and researchers,14 for it develops a culturally sensitive and outcome-based policy for non-Indigenous researchers before partnerships are entered into.
The multidisciplinary Department of Rural Health (DRH), University of Melbourne, was established in 1999. One of its three objectives is to assist in reducing the health differential between Indigenous and non-Indigenous people.15,16 The DRH was sited in Shepparton, partly because the area has the largest Indigenous population in Victoria outside Melbourne (estimated 6000 Indigenous residents).17 This includes communities in Shepparton/Mooroopna, Barmah/Cummeragunja, Echuca/Moama, Kerang, Swan Hill and Albury/Wodonga. One community is a small town of mostly Aboriginal residents, and the others have Indigenous residents living among the non-Indigenous population. These communities have high rates of diabetes, heart disease and depression (about 40%–50% for each), compounded by huge rates of unemployment, very low completion of high school, alcohol and drug issues, low incomes and low self-esteem.18,19 Exact rates for many of these are lacking at the community level and it is likely that many unidentified health issues also exist.
Indigenous communities in this region have had negative experiences with research projects due to the lack of community control, lack of local benefits, and interpretation of data in isolation from social context.9,13,20 Therefore, a framework was developed to build a partnership between local Indigenous communities and the new academic department.
The Koorie Health Partnership Committee (Box 1) was established in 1999. All Koorie organisations in the region were invited to join the committee, which meets bi-monthly to identify health priorities, develop specific projects and review the activities of the DRH, communities and individual organisations. The committee has initiated projects on topics including cross-cultural issues, workforce, and a "bush tucker" project in which nutritional, cultural and legal aspects of traditional foods can be examined. Members of the partnership committee have also been on selection committees for new appointments to the department and acted as advisers to the Koorie Team.
The partnership committee recognised the need for written protocols to guide non-Indigenous members of the DRH in working within Koorie communities. In consultation, the Koorie Team developed guidelines to ensure that members of the DRH are informed of appropriate actions and negotiation within Koorie communities and organisations. The guidelines are also intended to develop trust, reinforce the integrity of the DRH and maintain robust relationships with local communities that can withstand some difficulties (eg, funding that only partially meets partnership committee objectives). The guidelines also protect non-Indigenous researchers, maintaining their neutrality.
The guidelines are based on general research guidelines, the National Health and Medical Research Council (NHMRC) Guidelines on Ethical Matters in Aboriginal and Torres Strait Islander Health Research,13 and the input of researchers and the partnership committee.
The DRH framework means that research is undertaken with consultation before, during and after the project (Box 2). Usually a Koorie research assistant is employed to assist with consultation and data collection and analysis. Payment of study participants and steering committee members has not been common, but research assistants and project officers are paid.
Although the process appears straightforward, the complexity cannot be overstated. For example, different Koorie organisations often have different expectations of outcomes, and levels of involvement, interest and commitment. Because of the holistic nature of such research, many organisations are usually involved, with unclear boundaries and changing requests. Further, the guidelines sometimes challenge scientific procedures or call for researchers to negotiate sampling, data collection techniques and presentation of results.
The usual university ethics approval is still required.21,22 Ethics committees have agreed on requirements to date, including steering committees, employing Koories, storage of data with the Koorie Team, written consent, the role of the partnership committee, ongoing consultation and approval of all reports. Our framework extends general ethical requirements, calling for research to be culturally sensitive and accepted as necessary and useful by the communities of the participants. This gives communities the power to decide what research should be undertaken, a voice on how research is conducted, and control over presentation of the findings.
Participatory research is increasingly being used in a variety of settings among indigenous communities in Canada, the United States, Sweden, South Africa and New Zealand.2,12,23-25 The approach presented here, in conjunction with others,9,13 should provide a positive starting point for negotiation between Indigenous communities and researchers in other regions of Australia.
Rather than develop one-off Koorie research projects, the DRH has developed a framework to promote partnership with Koorie communities in research, education, employment and community development. This framework reflects the Indigenous holistic view of health and the relationship between physical health outcomes, the social determinants of health and the need to respect the integrity of each Indigenous community. Most importantly, ongoing negotiations allow flexibility within the guidelines — they are adapted to each project and allow for the development of new phases and extensions to previous projects.
As relationships between DRH and Koorie communities have strengthened, the workload for the partnership committee and Koorie Team has increased dramatically. Including Koories in most health research has meant the partnership committee and Koorie Team are involved in most research at the DRH. In addition, despite inclusive processes and openness of information, local political and family histories still raise issues. The partnership committee, Koorie Team and researchers can find themselves between conflicting family groups or perceived to favour some families or organisations over others. The challenge for outsiders to understand and address this, and for insiders to work between them while living in these communities, remains.
The growth and use of evidence for developing and implementing sustainable interventions to improve Indigenous health is urgently required. Our framework addresses the key concern of undertaking this while respecting history and Indigenous cultures.
1: Organisations in the Koorie Health Partnership Committee
Allinjarra Aboriginal Cooperative (Kerang): Cultural centre with a range of support and healthcare programs.
Bangerang Cultural Centre (Shepparton): Keeping Place, cultural centre, community education for Koorie and other communities.
Department of Rural Health, University of Melbourne (Shepparton): Research, university education, training, community development.
Goulburn Valley Aboriginal Women's Resource Group (Shepparton): Koorie women's group to provide support, information and develop women's programs.
Koorie Economic Employment and Training Agency (Shepparton): Training and employment program with non-Indigenous businesses/organisations.
Local Aboriginal Education Consultative Group (Shepparton): Works with primary and secondary schools to support Koorie students. Offers preschool and daycare.
Mungabareena Aboriginal Cooperative (Wodonga): Cultural centre with a range of support and health care programs.
Rumbalara Football Netball Club (Shepparton): Football and netball club participating in 'mainstream' league; also runs a health promotion program.
Rumbalara Aboriginal Cooperative (Mooroopna): Cultural centre with a range of support programs and an Aboriginal Health Service.
Savina Morgan Health Centre (Cummeragunja): Aboriginal Health Service.
Swan Hill and District Aboriginal Co-operative (Swan Hill): Cultural centre with a range of support and health care programs.
Abstract
The Department of Rural Health, University of Melbourne, has developed a framework for conducting research in partnership with Indigenous communities.
The framework addresses past inappropriate research practices, incorporates cultural understandings, and outlines culturally appropriate protocols.
The four parts of the framework are a committee to initiate, direct and oversee all research projects; a Koorie Team to guide research; a set of research guidelines; and a policy for the department.
The framework has been used to develop strong relations with Koorie communities and conduct various health projects.