Aboriginal and Torres Strait Islander Australians have demonstrated extraordinary cultural strength, adaptability and resilience across time. Vital for the continuing improvement of health outcomes is research that produces the knowledge, processes, tools and resources to enable communities, health practitioners, other service providers and policymakers to improve health care, prevent disease and support wellbeing. Shifts in health research approaches, as described in the previous chapter, have been complemented by significant changes to Indigenous health policy.1

Our CQI research network has learnt from and contributed to these efforts. Early quality improvement research played an important role in testing the acceptability of CQI approaches and their effect on Indigenous PHC.2 Important gains have since been made. Quality improvement efforts in PHC have been accelerated and strengthened at multiple levels and contexts.3 Clinical performance assessment and improvements have been achieved across a range of services4 and structured health service and systems assessments have been facilitated to support best practice.5 Quality improvement has increasingly focused on the social, cultural, structural and environmental factors that influence health.6 As this work has progressed, research teams have adopted a broader agenda to embed Aboriginal and Torres Strait Islander leadership, participation and priorities in health and wellbeing research. Network members have created spaces to safely share their experiences from different viewpoints and learn from each other. These developments are essential for bringing about meaningful change and lasting benefits for communities.

This chapter shares lessons learnt by the research network, which brings together Aboriginal and Torres Strait Islander and non-Indigenous stakeholders to improve healthcare equity. Drawing on publications from network members, we describe some of the structures and mechanisms that are being used to foster culturally safe, strengths-based and transformative PHC and quality improvement research among Aboriginal and Torres Strait Islander communities in Australia. The lessons learnt have informed the principles of CQI implementation and research, and may offer insights for others seeking to improve equity and justice through research.

Building on strengths to transform research

Research networks provide a forum for experimentation and knowledge creation, information exchange and the spread of good ideas and practice. They can be useful in addressing complex issues or “wicked” problems when solutions go beyond the control and scope of any one agency.7 

Our CQI research network in Aboriginal and Torres Strait Islander PHC has had several iterations (see overview in Chapter 9). Since 2015, the network has used an “innovation platform” approach. Leaders of large-scale change have argued that innovation platforms create an opportunity for people working in different parts of the system to tackle challenging issues together,8 including entrenched systemic problems.

Centre for Research Excellence in Integrated Quality Improvement

The vision of the Centre for Research Excellence in Integrated Quality Improvement (CRE-IQI) innovation platform, which was funded from 2015 to 2019, was to accelerate and strengthen large-scale primary healthcare quality improvement efforts. To achieve this vision, stakeholders from multiple roles and organisations were brought together to work on shared goals, find solutions to common quality improvement problems, learn from each other, and take collective action. The elements of the CRE-IQI innovation platform are shown in Figure 22.1.

Members included Indigenous and non-indigenous clinicians, researchers, policy and project managers from health services (including community-controlled organisations), regional service support organisations, national support organisations, universities, research institutes and government. As an “open platform”, the CRE-IQI encouraged new partnerships and collaborations and provided a vehicle for integrated research and knowledge translation.9 

“All teach, all learn” approach to research capacity strengthening

One of the goals of the CRE-IQI was to increase the capacity of members to participate in and lead CQI research. It was recognised that this involved capacities for building research skills and confidence, taking ownership and leadership, collaborating, forming research partnerships and working in a culturally safe way, translating research, and building structures and resources.10 

The CRE-IQI developed a model that drew on capacity strengthening11 and evidence from capacity building for quality improvement12 to theorise strategies for strengthening CQI research capacity in Aboriginal and Torres Strait Islander PHC.13 Consistent with the way of working across the research network, an “all teach, all learn” maxim was adopted. “All teach, all learn” embodies the value placed upon mutual learning, where all involved – Aboriginal and Torres Strait Islander and non-Indigenous people, those involved in primary healthcare services, the communities they serve, early career and experienced researchers – are learners and teachers. The strengths-based process used for developing the model identified the need to tackle power imbalances, cultural contexts, relationships, systems requirements and the existing knowledge, skills and experience of all involved to strengthen research capacity.14 

Four principles were identified for implementing an “all teach, all learn” approach to CQI research capacity strengthening across the network: mutual or two-way learning; Indigenous leadership as core; sharing power and facilitating relationships; resourcing and continuous improvement. The principles are expanded in Box 22.1.

Guiding principles

When the CRE-IQI was funded in 2015, members agreed that the research network should have an agreed set of operating principles, to guide how Aboriginal and Torres Strait Islander research values21 would be put into practice in quality improvement research. The principles were adapted, with permission, from a cancer research collaboration in Aboriginal and Torres Strait Islander health, as follows:

• respect the past and present experiences of Indigenous people
• work in partnership
• ensure Indigenous leadership and direction of research – in all stages of the process
• conduct ethical research
• get the research question right
• design research that will be feasible, produce outcomes and build capacity
• identify and provide the right resources and training
• establish systems and practices to support the application of evidence to improve Indigenous primary health care and health outcomes.

Published literature offered little in the way of critical reflection to support the implementation of such principles. The CRE-IQI’s management group undertook to evaluate how the principles were implemented and the outcomes over the research network’s lifespan.

Evaluating the implementation of the Centre for Research Excellence in Integrated Quality Improvement

Four approaches were used to evaluate the implementation of the CRE-IQI: developmental evaluation; principles-focused evaluation; social network analysis; and framework analysis (Box 22.2).22 While the resources and expertise required to evaluate this network were considerable, data sources were leveraged for multiple purposes to create efficiency and avoid “evaluation fatigue” amongst participants.

Applying different methodologies enabled the network to respond promptly to the “emergent” nature of a research system that was complex and dynamic. Together, the four evaluation approaches provided a nuanced understanding of how the collaboration was formed, how it worked, what changes were needed as work progressed, and what it achieved. This would have been difficult to achieve with any single evaluation approach.27 Specific projects associated with the CRE-IQI were also evaluated using impact and economic evaluation methods28 and developmental evaluation.29 The learning that may be drawn from the evaluation of the CRE-IQI innovation platform is an example of how complex research collaborations in health may be evaluated, strengthened and reformed.

Developmental evaluation use and findings

Developmental evaluation was used to inform and support the formation, functioning and outcomes of the CRE-IQI. Innovation platforms have continuous reflection, learning and adaptation as a specific design principle. As developmental evaluation emphasises continuous learning and adaptation, it was well aligned. While rigorous in its use of multiple data sources and varied methods, the developmental evaluation provided scope to move away from a “what is planned needs to be achieved” mindset to one that could continually adapt based on what we were learning and how the collaboration was evolving.

We found the developmental evaluation approach suited to a research collaboration aimed at integrating quality improvement efforts at different levels of the health system in a complex PHC environment. Use of systems thinking (a key principle of developmental evaluation) and attending to relationships and interactions between CRE-IQI members provided insights into how CRE-IQI strategies and processes could be modified to work more effectively. Timely feedback (both opportunistic and at predetermined times) ensured that evaluation data was used to test modifications and make further improvements.30 

Developmental evaluators need to become embedded within projects to build and maintain evaluator–team relationships, and to know and respond in real time to the evaluation context and innovators’ concerns.31 Having a member of the CRE-IQI staff team in the lead evaluator role met those needs.

Principles-focused evaluation use and findings

A principles-focused evaluation approach enabled critical reflection on how, to what end and whether the guiding principles of the CRE-IQI were being implemented. Interviews with collaboration members and review of documents generated themes that were iteratively discussed with the wider membership, refined and categorised into “strategies” – activities by which implementation of our guiding principles were recognised; “outcomes” – results seen from implementing the principles; and “conditions” – aspects of the context that facilitated and constrained implementation of the principles.32

Five strategies were identified as supporting implementation of the principles: honouring the principles, sharing and dispersing leadership across the collaborative, collaborating purposefully, adopting a culture of mutual learning, and being dynamic and adaptable.

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 participating in the network and taking an “innovation platform” approach. 35 The strategies, outcomes and conditions are brought together in Figure 22.2.

Having collaboratively developed principles held genuine meaning for members and was important for guiding the network: the principles acted as a compass for navigating complexity and conflict. Implementing the principles within a culture of continuous critical reflection, learning, adaptation and reinterpretation provided focus, direction and a way of working together.36 

Network analysis use and findings

The CRE-IQI conducted two network analyses over its five-year span. Firstly, cross-sectional surveys of membership were used twice to collect network data. Survey questions captured member feedback on the perceived effect of the CRE-IQI and applied network metrics to examine the functioning of the CRE-IQI over its life cycle.37 A second network analysis examined collaboration and knowledge generation through the co-authorship of peer-reviewed articles.38 Findings are detailed in the cited papers. These were the key messages:

• there was a broadening of relationships and a sharing of knowledge not only with existing partners but also new ones; more than a third of sharing occurred outside immediate collaborative partnerships, indicating good network support39
• network analysis was useful for evaluating the functioning and collaboration of an innovation platform at individual, organisational and health system levels40
• collaboration in publications increased as the network consolidated and expanded
• a need to remedy inequities in female and Indigenous authorship was identified
• diverse authorship and decentralisation of the network appeared to build research impact and advance CQI knowledge and practice
• building long-term relationships facilitated participatory research in CQI.41

Framework analysis use and findings

The evaluation study team used a framework analysis approach to analyse project records, reports and publications, and interviews with stakeholders. Data were mapped retrospectively against the domains of the Agency for Healthcare Research and Quality learning collaboratives taxonomy42 to understand how and why the CRE-IQI generated innovations.

Findings were detailed by J. Bailie, Peiris and colleagues.43

 These were the key messages:

• The long history of working together enabled trusting relationships, a collective identity and a foundation for new people to join. Time was a crucial element.
• Innovation was stimulated by bringing people together to learn, share ideas and solve problems, with Indigenous participation and leadership at the core of the research agenda-setting.44

Impact and economic evaluation of CRE-IQI projects

In addition, a few research projects of the CRE-IQI were evaluated using the “Framework to Assess the Impact from Translational health research” tool. The tool combines quantitative and qualitative measurement techniques to assess effectiveness. It uses a scorecard approach to report research outcomes and impact across five specific domains of benefit, the social return on investment, and case studies.45 

The use of different evaluation approaches identified generalisable lessons for CQI research networks:

• trusting, respectful research relationships developed over time can support productivity and a collective identity, and provide a foundation for new members
• collectively agreed operating principles help in maintaining direction and navigating complexity
• bringing people together supports learning, sharing of ideas and problem-solving
• diverse participation can be important for advancing innovation, equity and the knowledge and practice of CQI in PHC
• the continuous learning and adaptation that generally characterise CQI can be used to improve the operation of a CQI research network.

Centre for Research Excellence: Strengthening Systems for Indigenous Health Care Equity

The Centre for Research Excellence: Strengthening Systems for Indigenous Health Care Equity (CRE-STRIDE, 2020–25) built on the work and evaluation of the CRE-IQI (2015–19) by strengthening Aboriginal and Torres Strait Islander research leadership, and changing from an advisory group model to one that distributed leadership at all levels, supported by an “all teach, all learn” philosophy between Indigenous and non-Indigenous collaborators. CRE-STRIDE was committed to embedding Indigenous research leadership and methodologies throughout its structures and research programs, which were brought together in the CRE-STRIDE Framework (Figure 22.3).46

The research approaches used in CRE-STRIDE were based on growing evidence of the importance of community-driven, culture-strengthening interventions in Indigenous primary healthcare settings. CRE-STRIDE’s way of working put the strengths, needs and aspirations of Aboriginal and Torres Strait Islander people at the centre of the research process, informed by methodologies that reflect Indigenous ways of knowing, being and doing.

CRE-STRIDE vision and guiding principles

CRE-STRIDE’s vision was equitable health care for Aboriginal and Torres Strait Islander peoples. Through CQI and collaborative implementation research, the network aimed to strengthen PHC and its interconnections to broader systems that affect health and wellbeing.

Specific strategies for achieving this vision were Aboriginal and Torres Strait Islander research leadership and reciprocal learning; strengthening quality improvement processes within primary healthcare systems and enhancing community engagement; and extending quality improvement processes and collaborations across sectors to promote holistic health outcomes recognising the importance of social and cultural determinants of health and wellbeing.

CRE-STRIDE’s guiding principles of practice were modified from the CRE-IQI to reflect active commitments:

• to respect – respect the past and present experiences of Aboriginal and Torres Strait Islander peoples
• to lead – Indigenous leadership or co-leadership on all projects
• to learn – “all teach, all learn” approach to collective capacity strengthening
• to relate – collaboration and partnership
• to share – sharing research and translation
• to change – work alongside community and other stakeholders to generate impactful research.47

These principles informed a way of thinking and doing that fosters culturally safe, strengths-based and transformative primary healthcare research with Aboriginal and Torres Strait Islander communities.

An Indigenous research framework for quality improvement research

CRE-STRIDE’s Indigenous Research Framework articulated these principles and provided guidance on how the collaboration could operationalise them. The framework brought together key themes from Indigenous research scholarship (as described in the previous chapter) that were important to CRE-STRIDE’s goals and work plan. Box 22.3 explains the components of CRE-STRIDE’s Indigenous Research Framework.

A matrix of strategies on how the collaboration can implement STRIDE’s principles of practice at an individual, project, collaboration and broader research system level was also developed, with the expectation that both the framework and the matrix would evolve over time. These documents formed the basis of regular reflection, evaluation and continuous improvement, with input from the broader collaboration.

Evaluating the Centre for Research Excellence: Strengthening Systems for Indigenous Health Care Equity (CRE-STRIDE)

A developmental evaluation approach was carried forward from CRE-IQI into CRE-STRIDE. The evaluation focused on newer aspects of the research network: increasing the application of Indigenous research methodologies and leadership; strengthening CQI processes within primary healthcare systems with a focus on community linkages; and extending CQI processes across sectors to promote health and wellbeing and to strengthen social and cultural determinants of health. The Ngaa-bi-nya Aboriginal and Torres Strait Islander program evaluation framework49 guided data collection and analysis in the evaluation. Ngaa-bi-nya takes a strengths-based approach, prompting evaluators to consider the historical, policy and social landscape surrounding Aboriginal and Torres Strait Islander peoples in contemporary settings.

Developmental evaluation findings (not finalised at the time of publication) indicate that the CRE-STRIDE network achieved its goals, despite the early challenges and ongoing effects of the Covid-19 pandemic and weather-related disasters that affected the host organisation and many network members.

• Indigenous leadership became strongly embedded across the network, with Indigenous people represented at all levels.
• The Indigenous Research Framework was accepted and used across many of the STRIDE projects; some members sought guidance for applying the framework in their research. Relationality was highly valued. A focus on Indigenous knowledge and sovereignty strengthened community participation and self-determination in research, broadened members’ thinking around data and inclusivity, and expanded the evidence base for Indigenous methodologies in CQI research.
• By integrating Indigenous leadership, knowledges and methodologies throughout the CRE-STRIDE, members were able to enhance community linkages and push the boundaries of CQI to incorporate social, cultural and environmental determinants of health.
• The foundational work of previous iterations of the research network allowed CRE-STRIDE to diversify its research focus and take a more holistic approach to PHC and equity for Indigenous communities. Areas of CQI research included clinical care, social determinants of health, social and emotional wellbeing, environmental and climate change effects.50

The next phase of the Indigenous-led CQI research network is STAUNCH – Stronger Together As Unified Nations for Community-led Health. STAUNCH aims to promote sovereign health and wellbeing by centring Indigenous Nation Building to assert local policy and program solutions for improving the quality of comprehensive primary health care. Research activities focus on strengthening First Nations’ self-governance, defining new quality and safety standards for care models that include the determinants of health, and guiding policymakers to look at health and wellbeing solutions that holistically consider social, political, economic and environmental issues.

Indigenous data sovereignty

CRE-STRIDE’s Indigenous Research Framework (Box 22.3) outlines actions the network took to advance Indigenous data sovereignty, a global movement concerned with the right of Indigenous peoples to govern the creation, collection, ownership and use of data about Indigenous peoples, lands and cultures.51 In support of these rights, the Global Indigenous Data Alliance has developed the CARE principles for Indigenous data governance, which are framed around collective benefit, authority to control, responsibility and ethics.52 Case studies, ecosystems and resources for advancing data sovereignty are becoming increasingly available.53 Indigenous data sovereignty holds messages for CQI research.

The Indigenous data sovereignty movement challenges how governments and institutions have historically captured and used data representing Indigenous peoples to develop policies and programs that do not protect and respect Indigenous interests or worldviews. It also draws attention to the way aggregated and decontextualised data can present people as problematic54 because they are unable to meaningfully reflect lived experiences, histories and cultural realities. These concerns reflect wider social and global movements calling for a shift from descriptive, problem-focused research about historically disempowered or socially excluded groups, to more action-oriented and solution-focused research that facilitates social inclusion, self-determination and health equity.55 

The aggregation of data is, at times, necessary for population health approaches such as CQI and epidemic or pandemic management. Aggregated data provide information about the issues communities and populations are dealing with, enable changes in population health to be measured, improvement strategies to be designed and resources to be allocated. When using aggregated population health data to plan policies and improvement interventions, these aspects need to be considered:

• whether the data incorporates and reflects the strengths, values, knowledge systems and practices of the people to whom the policies relate, appropriately as determined by those groups56
• how to ensure communities have control over the distribution of resources based on local priorities, existing resources, knowledge, and governance processes57
• how data management systems can be used as a resource to serve communities.58

Summary

This chapter has described how a CQI and health systems research network in Aboriginal and Torres Strait Islander PHC has actioned key principles and built on learning to transform a CQI research program in Australia. The journey began with a participatory action research project testing the feasibility of CQI in 12 primary healthcare services59 and evolved into a collaboration involving diverse partners committed to primary healthcare quality improvement. We have shared lessons learnt through two decades of CQI research and evaluation, describing mechanisms and features developed to support innovation and to foster Indigenous-led, strengths-based quality improvement research with Aboriginal and Torres Strait Islander communities.

Equitable, collaborative research relationships have positive relational features that include trust, respect for knowledge and each other, a sense of belonging, and open lines of communication. Positive structural features are also necessary to improve equity in research, including opportunities for capacity building, inclusive decision-making, recognition of contribution (for example, through authorship and distributed leadership), and governance structures that empower participating organisations and communities.60 These features are important for progressing the network’s ongoing research agenda and meeting future research challenges. The capacity to respond and adapt to changing contexts is essential for an equity-focused quality improvement research network and for the effective implementation of CQI.

References