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

Abstract

BackgroundFor 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.MethodsQualitative 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.ResultsFrom 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.ConclusionsHealth 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.

The quality of Australian Indigenous primary health care research focusing on social and emotional wellbeing: a systematic review

“…However, there appear to be few examples of their implementation in practice. 50 In this review, we identified outcomes related to evaluating interventions, services or training in seven studies 19,20,2729,33,34,36,37 or assessing resources in two studies. 25,31 These outcomes indicate potential impact at the community level.…”

The Marulu Strategy 2008–2012: overcoming Fetal Alcohol Spectrum Disorder (FASD) in the Fitzroy Valley

“…These perspectives form the basis of a sound social‐ecological approach 17 . This multi‐layered perspective needs considerable attention in Aboriginal health, where research has traditionally been done on, not with, Aboriginal people 18,19 . Discussion focused on improving the conduct of Aboriginal health research has stressed the importance of engaging with the community to address community priorities and goals before the design process.…”

“…In addition, facilitating local ownership, control, and the development of research capacity is essential to respecting cultural protocols. Specific recommendations to improve research conduct include working with community and local organisations to embed research in local services, employment of local people in research, having a flexible research approach, and patience to allow sufficient time for consultation and data collection 19 …”

“…17 This multi-layered perspective needs considerable attention in Aboriginal health, where research has traditionally been done on, not with, Aboriginal people. 18,19 Discussion focused on improving the conduct of Aboriginal health research has stressed the importance of engaging with the community to address community priorities and goals before the design process. In addition, facilitating local ownership, control, and the development of research capacity is essential to respecting cultural protocols.…”

“…Specific recommendations to improve research conduct include working with community and local organisations to embed research in local services, employment of local people in research, having a flexible research approach, and patience to allow sufficient time for consultation and data collection. 19 Unfortunately much of the dialogue about Aboriginal people controlling their own research agenda has been theoretical with research activities 'on the ground' very rarely reported. [19][20][21] The following paper describes the development and implementation of a multifaceted strategy to prevent, diagnose, and manage FASD driven by community leaders in the Fitzroy Valley, and their research partners.…”