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‘We are Not Just Participants—We are in Charge’ : The NACCHO Ear Trial and the Process for Aboriginal Community-controlled Health Research

2005; Taylor & Francis; Volume: 10; Issue: 2 Linguagem: Inglês

10.1080/13557850500071038

1465-3419

Sophie Couzos, Traven Lea, Richard Murray, Margaret Culbong,

Ethics in Clinical Research

Abstract Objective Methodological criteria that characterise ethically sound community-based studies are often described in overviews but are rarely documented in clinical studies. Research investigating the health of Aboriginal Australians is often small-scale, descriptive and largely driven by non-Indigenous people. The 'community-controlled' model of research relating to Aboriginal peoples health is a form of 'participatory' research that shifts the balance of control towards those being researched. This paper describes the methodological issues and principles that underpin community-controlled health research; their practical application; and encourages their adoption in research involving Indigenous populations. Design Descriptive report of the methods used to conduct the landmark Aboriginal community-controlled multi-centre double-blind randomised controlled clinical ear trial investigating ototopical treatments for chronic suppurative otitis media. Results The characteristics of the community-controlled research model are illustrated under the headings of: setting the research agenda; research project planning and approval; conduct of research; and analysis, dissemination and application of findings. Conclusion The 22 methodological elements which defined the community-controlled design of the ear trial may assist community groups, external research bodies and funding agencies to improve the acceptability, quality and scope of research involving Indigenous peoples. Aboriginal community-controlled organisations are well placed to lead research, which can be interventional and of a high scientific standard without compromising the values and principles of those being researched. With over 120 Aboriginal community-controlled health services (ACCHSs) across Australia, the potential exists for these services to engage in multi-centre research to realise solutions to health problems faced by Indigenous Australians. Keywords: ReviewParticipatoryResearchIndigenousAboriginalCommunity-BasedCommunity ControlEthicsPolicyAboriginal Health WorkerProcessMethodologyCONSORTEarRCTCSOMSuppurativeOtitis MediaFluoroquinoloneOtotopicalOtotoxicityWorld Health OrganisationPublic HealthChronic Suppurative Otitis MediaHearingCiprofloxacinSofradexChildHumanClinicalTrialGuidelinesEthnicity Acknowledgments NACCHO acknowledges and thanks the following for assistance in carrying out this study: the late Dr Puggy Hunter, the NACCHO Board of Directors, NACCHO Research Subcommittee, and the following Aboriginal Community Controlled Health Services: Geraldton Regional Aboriginal Medical Service, Wirraka Maya Health Service, Kimberley Aboriginal Medical Services Council (Bidyadanga Community Clinic, Yura Yungi Aboriginal Medical Service, Derby Aboriginal Medical Service), Aboriginal and Islander Community Health Service, Brisbane, Goondir Aboriginal and Torres Strait Islander Community Health Service, Townsville Aboriginal and Islander Community Health Service, Cherbourg Health Action Group. Thanks also to the members of the technical consortium: James Cook University (Professor Ian Ring, Associate Professor Reinhold Mueller, Colleen Paice), Telethon Institute for Child Health Research (Dr Deborah Lehmann, Dr Sandra Eades, Dr Anne Read), otolaryngologists (Mr Harvey Coates, Mr Francis Lannigan), WA Centre for Pathology and Medical Research (Dr Clay Golledge, Dr Rod Bowman), Australian Hearing (Mr Ian Henderson), Irene Nannup, the Derbyl Yerrigan Aboriginal Medical Service, and Dr Richard Murray (KAMSC). The study was supported by: National Health and Medical Research Council, the Commonwealth Department for Education, Training and Youth Affairs, RioTinto Aboriginal Foundation, Alcon Laboratories Australia Pty Ltd (provision of pharmaceuticals).