Dynamic consent as a new approach for engaging people in health research and upholding data sovereignty – Victorian Aboriginal perspectives
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Indigenous health research is largely informed by non-Indigenous views and led by non-Indigenous people working in non-Indigenous organisations. Our research findings highlight an urgent need for fundamental shift, reframing and reinvestment in Indigenous health research in Australia.
Dynamic consent is a new approach to consent with significant potential for improving the research experience of Aboriginal Australians. Compared to traditional or broad consent, which is typically undertaken once at study entry, dynamic consent is active, allowing for ongoing engagement and control over research involvement over time.
Based on the learnings from the National Survey of key Indigenous health researchers and stakeholders, aiming to identify variations in the application of ethical guideline documents, as well as governance and consent arrangements among researchers conducting Aboriginal and Torres Strait Islander health research we have developed a new governance framework the Culturally Adaptive Governance Framework (CAGF).
The CAGF is currently implemented in two national projects (The Australian Stroke Alliance and the Flash GM study) and will be incorporated into the Victorian Aboriginal Research Accord Project (VARAP) led by VACCHO in partnership with the Victorian Government.
This CAGF seeks to centre Indigenous Voice, Leadership and Governance to uphold Indigenous governance and sovereignty in Indigenous health and medical research and will be implemented for the life of the projects, and will be internally evaluated for its utility and benefit.
The output of this project will support improved research practices and participant experiences of health research. For Aboriginal people, this may offer more meaningful and culturally-sensitive consent processes and enhance participant control over data. This will also benefit Indigenous health researchers by improving trust and engagement with Aboriginal participants.
The National Survey highlighted the gaps and inadequacies of guidelines in providing space for Indigenous governance, self-determination and data sovereignty in health and medical research.
This brought to light the power imbalances that continue to undermine ethical conduct and practice in Aboriginal and Torres Strait Islander health research.
The National Survey also highlighted what may be necessary for research environments to enhance ethical research with Aboriginal and Torres Strait Islander people, supporting greater equity in the research endeavour leading to more tangible benefit of research.
These findings led to the development of a CAGF governance framework that creates space for Indigenous researcher to be leaders in the research that affects their communities.
The CAGF centres Indigenous Voice, Leadership and Governance to uphold Indigenous governance and sovereignty in Indigenous health and medical research.
- Embed a governance framework within all Indigenous research that allows for Aboriginal community’s self-determination, governance, and data sovereignty. The aim is that this framework creates space for projects to be Aboriginal led or co-led, are informed by Aboriginal literature and are culturally appropriate.
- This widespread impact at a national level and gaining national attention and it is already having a positive impact in two national multicentre states (Australian Stroke Alliance and the Flash GM study)
- Duke DLM, Prictor M, Ekinci E, Hachem M, Burchill LJ. Culturally Adaptive Governance-Building a New Framework for Equity in Aboriginal and Torres Strait Islander Health Research: Theoretical Basis, Ethics, Attributes and Evaluation. Int J Environ Res Public Health. 2021 Jul 27;18(15):7943. doi: 3390/ijerph18157943. PMID: 34360234; PMCID: PMC8345529.
- Burchill LJ, Kotevski A, Duke DL, Ward JE, Prictor M, Lamb KE, Kennedy M. Ethics guidelines use and Indigenous governance and participation in Aboriginal and Torres Strait Islander health research: a national survey. Med J Aust. 2022 Oct 17. doi: 5694/mja2.51757. Epub ahead of print. PMID: 36253955.
- ABC Radio Interview, Indigenous Voice ‘vital’ to improve health outcomes for First Nations people https://www.abc.net.au/news/2022-11-22/indigenous-voice-vital-to-improve-health-outcomes/101684252, 22 November 2022
- Indigenous health research: governance by Indigenous organisations vital, Cate Swannell Med J Aust, Published online: 7 November 2022 https://www.mja.com.au/journal/2022/indigenous-health-research-governance-indigenous-organisations-vital