Aboriginal and Torres Strait Islander community experiences and recommendations for health and medical research: a mixed methods study.

OBJECTIVE

To describe Aboriginal and Torres Strait Islander communities' processes, positioning and experiences of health and medical research and their recommendations.

DESIGN

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.

MAIN OUTCOME MEASURES

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.

RESULTS

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.

CONCLUSION

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.