Aboriginal health research in the remote Kimberley: an exploration of perceptions, attitudes and concerns of stakeholders

BACKGROUND: For decades Indigenous peoples have argued for health research reform claiming methods used and results obtained often reflect the exploitative history of colonisation. In 2006 the Kimberley Aboriginal Health Planning Forum (KAHPF) Research Subcommittee (hereafter, the Subcommittee) was formed to improve research processes in the remote Kimberley region of north Western Australia. This paper explores the major perceptions, attitudes and concerns of stakeholders in the Subcommittee. METHODS: Qualitative analysis was carried out on data retrospectively collected from multiple evidentiary sources linked to the Subcommittee i.e. database, documents, interviews, review forms and emails from 1 January 2007 to 31 October 2013. RESULTS: From 1 January 2007 to 30 June 2013 the Subcommittee received 95 proposals, 57 (60%) driven by researchers based outside the region. Local stakeholders (22 from 12 different Kimberley organisations) raised concerns about 36 (38%) projects, 30 (83%) of which were driven by external researchers. Major concerns of local stakeholders were inadequate community consultation and engagement; burden of research on the region; negative impact of research practices; lack of demonstrable community benefit; and power and control of research. Major themes identified by external stakeholders (25 external researchers who completed the review form) were unanticipated difficulties with consultation processes; barriers to travel; perceiving research as a competing priority for health services and time-consuming ethics processes. External stakeholders also identified strategies for improving research practices in the Kimberley: importance of community support in building good relationships; employing local people; flexibility in research approaches; and importance of allocating sufficient time for consultation and data collection. CONCLUSIONS: Health research in the Kimberley has improved in recent years, however significant problems remain. Prioritising research addressing genuine local needs is essential in closing the gap in Indigenous life expectancy. The long-term aim is for local health service connected researchers to identify priorities, lead, conduct and participate in the majority of local health research. For this to occur, a more radical move involving reconceptualising the research process is needed. Changes to institutional timeframes and funding processes could improve Indigenous and community-based research.