Collis Felicity, Booth Kade, Bryant Jamie, Ridgeway Tanika, Chamberlain Catherine, Hughes Jaquelyne, Griffiths Kalinda E, Wenitong Mark, O'Mara Peter, Brown Alex, Eades Sandra J, Kong Kelvin M, Kennedy Michelle
University of Newcastle, Newcastle, NSW.
Hunter Medical Research Institute, Newcastle, NSW.
Med J Aust. 2025 Feb 3;222 Suppl 2:S6-S15. doi: 10.5694/mja2.52571.
To describe Aboriginal and Torres Strait Islander communities' processes, positioning and experiences of health and medical research and their recommendations.
A cross-sectional online and paper-based survey.
SETTING, PARTICIPANTS: Representatives from Aboriginal and Torres Strait Islander health services and community-controlled organisations in Australia.
Responses to a 33-item mixed methods survey that explored communities' positioning and processes relating to health and medical research and their experiences of health and medical research in the previous 5 years. Recommendations for improving health and medical research were elicited via two open-ended questions.
Fifty-one community representatives nationally responded to the survey. Most representatives reported feeling slightly or very positive about research (37, 73%). More than half (33, 65%) reported having formal governance processes, and two-thirds of those without governance processes were interested in establishing such processes (12, 67%). Almost half reported that research has sometimes or never had benefit (25, 49%). Ethical principles that were most often reported as essential included those relating to sharing results back with community (45, 88%), translating research into policy and practice (37, 73%), employing Aboriginal and Torres Strait Islander staff (37, 73%), Indigenous data sovereignty and governance (36, 71%) and research agreements (35, 69%). Community representatives reported being approached frequently and in the later stages of research, with little input during the development and design stages of research. Most representatives reported that their communities had participated in Indigenous-led research (39, 76%). Community representatives highlighted the need for appropriate resourcing and funding to drive and lead their own research agendas.
Aboriginal and Torres Strait Islander communities continue to have negative experiences of research despite four decades of advocating for control, ownership and leadership of health and medical research. Researchers, funding bodies and institutions must examine current funding and research structures that reinforce current practices, to ensure transparency and accountability to communities by repositioning and giving power to communities to direct and lead their own health and medical research agendas.
描述原住民及托雷斯海峡岛民社区在健康与医学研究方面的流程、定位和经历，以及他们的建议。
一项横断面在线及纸质调查。
地点、参与者：澳大利亚原住民及托雷斯海峡岛民健康服务机构和社区控制组织的代表。
对一项包含33个条目的混合方法调查的回复，该调查探讨了社区在健康与医学研究方面的定位和流程，以及他们在过去5年中的健康与医学研究经历。通过两个开放式问题征集了改善健康与医学研究的建议。
全国51名社区代表回复了该调查。大多数代表表示对研究感到有些积极或非常积极（37人，73%）。超过一半（33人，65%）报告有正式的治理流程，在没有治理流程的代表中，三分之二有兴趣建立此类流程（共12人，67%）。近一半代表表示研究有时或从未带来益处（25人，49%）。最常被报告为至关重要的伦理原则包括与向社区反馈研究结果相关的原则（45人，88%）、将研究转化为政策和实践（37人，73%）、雇佣原住民及托雷斯海峡岛民工作人员（37人，73%）、原住民数据主权和治理（36人，71%）以及研究协议（35人，69%）。社区代表报告称在研究后期经常被接触，但在研究的开发和设计阶段几乎没有参与。大多数代表表示他们的社区参与了由原住民主导的研究（39人，76%）。社区代表强调需要适当的资源和资金来推动和引领他们自己的研究议程。
尽管原住民及托雷斯海峡岛民社区在倡导对健康与医学研究的控制、所有权和领导权方面已有四十年，但他们在研究方面仍有负面经历。研究人员、资助机构和院校必须审视当前强化现有做法的资助和研究结构，通过重新定位并赋予社区权力来直接引领他们自己的健康与医学研究议程，以确保对社区的透明度和问责制。
