Principles guiding ethical research in a collaboration to strengthen Indigenous primary healthcare in Australia: learning from experience

Abstract

IntroductionIndigenous communities worldwide are leading calls for all research involving Indigenous people to be underpinned by values and principles articulated by them. Many researchers are explicitly adopting these principles to guide what, where, how and when research is undertaken with Indigenous people. With critical reflection to support the implementation of such principles largely absent from published literature, this paper explores both the implementation of, and the outcomes from a set of guiding principles used in a large-scale Australian research collaboration to improve Indigenous health.MethodsIn this inductive qualitative study, we adopted a principles-focused evaluation approach. Based on interviews with 35 actors in the collaboration and a review of project documents, we generated themes that were then iteratively discussed, refined and categorised into (1) ‘strategies’—activities by which implementation of our guiding principles were recognised; (2) ‘outcomes’—results seen from implementing the principles and (3) ‘conditions’—aspects of the context that facilitated and constrained implementation of the principles.ResultsRespondents found it difficult to articulate how the guiding principles were actually implemented, and frequently referred to them as part of the fabric of the collaboration. They viewed the set of principles as mutually reinforcing, and as providing a rudder for navigating complexity and conflict. Implementation of the principles occurred through five strategies—honouring the principles; being dynamic and adaptable; sharing and dispersing leadership; collaborating purposefully and adopting a culture of mutual learning. Outcomes included increased Indigenous leadership and participation; the ability to attract principled and values-driven researchers and stakeholders, and the development of trusting and respectful relationships. The conditions that facilitated the implementation of the principles were collaborating over time; an increasing number of Indigenous researchers and taking an ‘innovation platform’ approach.ConclusionOur findings show that principles guiding collaborations are valuable in providing a focus, direction and a way of working together when they are collaboratively developed, hold genuine meaning for all members and are implemented within a culture of continuous critical reflection, learning and adaptation, with ongoing reinterpretation of the principles over time.

Methodological pluralism for better evaluations of complex interventions: lessons from evaluating an innovation platform in Australia

“…Continuing the spirit of the collaboration from previous years, the innovation platform of the CRE-IQI was an “open collaboration” that encouraged and welcomed new members. Within the scope of “integrated quality improvement” [ 25 ], it collaboratively developed and refined both research priorities to address key stakeholder needs and a set of principles to govern practice [ 19 ]. The innovation platform enabled PHC practitioners and policy-makers to articulate knowledge gaps and work with researchers and health sector stakeholders on relevant research topics [ 7 ].…”

“…Further details about how the CRE-IQI operated as an innovation platform [ 3 , 7 , 24 ], results from the respective evaluative approaches [ 7 , 19 – 21 , 26 ] and research findings of the CRE-IQI are published elsewhere [ 21 , 24 , 26 ]. In Box 1 we summarize the CRE-IQI research findings, engagement and impact [ 20 , 21 , 24 ].…”

“…1 , the evaluation of the innovation platform had an Indigenous perspective, which valued and centred Indigenous knowledge systems [ 30 , 31 ] by taking a strengths-based approach and adopting an emergent interactive design. The evaluation was guided by a set of co-created principles, for example, respecting the past and present experiences of Indigenous peoples, working in partnership, and ensuring Indigenous leadership and direction of research in all stages of the process [ 19 ]. The evaluation also took a pragmatic philosophical approach [ 13 , 32 ] based on the proposition that researchers should use the philosophical and/or methodological approach that works best for the particular research question and research context [ 33 – 35 ].…”

“…The methodology layer in Fig. 1 details the methodologically pluralist design, which included the following evaluation approaches: developmental evaluation [ 3 ], principles-focused evaluation [ 19 ], network analysis [ 20 ] and framework analysis [ 21 ]. The methods layer describes the specific methods employed for each evaluation approach.…”

“…In this paper, we outline and critically appraise a methodologically pluralist evaluation of an innovation platform in Aboriginal and Torres Strait Islander (hereafter referred to respectfully as Indigenous Australian, acknowledging cultural and historical diversity) primary healthcare (PHC). The paper first gives the setting of the innovation platform and then describes its evaluation and the four evaluation approaches employed: developmental evaluation [ 3 ]; principles-focused evaluation [ 19 ]; network analysis [ 20 ]; and framework analysis [ 21 ]. We then identify the lessons learned from undertaking a methodologically pluralist evaluation, and issues to consider when planning and conducting evaluations of complex interventions such as innovation platforms.…”