Indigenous Data Sovereignty, in its proclamation of the right of Indigenous peoples to govern the collection, ownership, and application of data, recognises data as a cultural and economic asset. The impact of data is magnified by the emergence of Big Data and the associated impetus to open publicly held data (Open Data). Aboriginal and Torres Strait Islander peoples, families and communities, heavily overrepresented in social disadvantage–related data will also be overrepresented in the application of these new technologies, but in a data landscape, Indigenous peoples remain largely alienated from the use of data and its utilization within the channels of policy power. Existing data infrastructure, and the emerging Open Data infrastructure, neither recognise Indigenous agency and worldviews nor consider Indigenous data needs. This is demonstrated in the absence of any consideration of Indigenous data issues in Open Data discussions and publication. Thus, while the potential benefits of this data revolution are trumpeted, our marginalised social, cultural and political location suggests we will not share equally in these benefits. This paper discusses the unforeseen (and likely unseen) consequences of the influence of Open Data and Big Data and discusses how Indigenous Data Sovereignty can mediate risks while providing pathways to collective benefits.
BackgroundImproving the wellbeing of Indigenous populations is an international priority. Robust research conducted with Aboriginal and Torres Strait Islander peoples is key to developing programs and policies to improve health and wellbeing. This paper aims to quantify the extent of participation in a national longitudinal study of Aboriginal and Torres Strait Islander (Indigenous Australian) children, and to understand the reasons why caregivers participate in the study.MethodsThis mixed methods study uses data from Wave 6 of Footprints in Time, the Longitudinal Study of Indigenous Children. We conducted descriptive analysis of quantitative variables to characterise the sample and retention rates. We applied conventional content analysis to 160 caregivers’ open-ended responses to the question, ‘Why do you stay in the study?’, identifying themes and overarching meta-themes.ResultsThe study has maintained a high retention rate, with 70.4% (n = 1239/1671) of the baseline sample participating in the study’s 6th wave. We identified seven themes related to why participants stay in the study: telling our story, community benefit, satisfaction, tracking Study Child’s progress, study processes, receiving study gifts, and valuing what the study stands for. These related to two meta-themes: reciprocity, and trust and connection. Caregivers reported that participation was associated with benefits for their family and community as well as for the study. They identified specific features of the Footprints in Time study design that built and maintained trust and connection between participants and the study.ConclusionsOur findings support the assertion that Aboriginal and Torres Strait Islander people want to be involved in research when it is done ‘the right way’. Footprints in Time has successfully recruited and retained the current-largest cohort of Aboriginal and Torres Strait Islander children in Australia through the use of participatory research methodologies, suggesting effective study implementation and processes. Participants indicated ongoing commitment to the study resulting from perceptions of reciprocity and development of trust in the study. Footprints in Time can serve as a successful model of Aboriginal and Torres Strait Islander health research, to promote good research practice and provides lessons for research with other Indigenous populations.
IntroductionIndigenist evaluation is emergent in Australia; the premise of which is that evaluations are undertaken for Indigenous, by Indigenous and with Indigenous people. This provides opportunities to develop new models and approaches. Exploring a collective capability approach could be one way to inform an Indigenist evaluation methodology. Collective capability suggests that a base of skills and knowledges exist, and when these assets come together, empowerment and agency emerge. However, collective capability requires defining as it is not common terminology in population health or evaluation. Our aim is to define the concept of collective capability in Indigenist evaluation in Australia from an Australian Indigenous standpoint.Methods and analysisA modified Rodgers’ evolutionary concept analysis will be used to define collective capability in an Australian Indigenous evaluation context, and to systematically review and synthesise the literature. Approximately 20 qualitative interviews with Aboriginal and Torres Strait Islander knowledge holders will clarify the meaning of collective capability and inform appropriate search strategy terms with a consensus process then used to code the literature. We will then systematically collate, synthesise and analyse the literature to identify exemplars or models of collective capability from the literature.Ethics and disseminationThe protocol has approval from the Australian Institute of Aboriginal and Torres Strait Islander Studies Ethics Committee, approval no. EO239-20210114. All knowledge holders will provide written consent to participate in the research. This protocol provides a process to developing a concept, and will form the basis of a new framework and assessment tool for Indigenist evaluation practice. The concept analysis will establish definitions, characteristics and attributes of collective capability. Findings will be disseminated through a peer-reviewed journal, conference presentations, the project advisory group, the Thiitu Tharrmay reference group and Aboriginal and Torres Strait Islander community partners supporting the project.
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