FormalPara Key Points

  • Co-design approaches are being increasingly used globally to find solutions to complex and persistent health issues, including cancer.

  • Co-design has potential as an acceptable methodological approach to redressing the disparities facing Indigenous peoples.

  • Co-design must be authentic and facilitate genuine and equitable collaboration to ensure meaningful benefits that are valued by the populations they are intended to serve.

  • Co-design with Indigenous peoples must be guided by transparent, agreed, and decolonizing principles and practices.

Co-design approaches are increasingly being applied in health-related research, policy, and practice settings when seeking solutions to complex and persistent issues, including cancer research. Given the need to address the prevailing disparities in cancer experienced by Indigenous peoples, a particular focus on applying co-design approaches in this context is emerging. But what exactly is “co-design” and how should it be used with Indigenous peoples in ways that are effective, collaborative, and acceptable to community and consumer groups? This chapter presents the emergence and ubiquity of co-design, an overview of Indigenist and decolonizing methodologies, the need to embed Indigenist approaches when co-designing with Indigenous communities, and an Australian case study illustrating the development of key principles and best practices for respectful co-design with Indigenous Australians in the broader health context.

The Emergence and Ubiquity of Co-design

The term co-design first emerged in Scandinavian participatory research design in the 1970s; however, it took several decades for the co-design approach to be established as an accepted and valued methodology [1]. While remaining firmly grounded in its origins in participatory research, social action research, and emancipatory philosophy [2], co-design is now an umbrella term that refers to a range of approaches that facilitate collaboration between professionals and consumers to find solutions to complex and persistent health problems [3]. Currently, there is no exact consensus definition of co-design—an issue of ambiguity identified by some Indigenous researchers as fostering disingenuous research with Indigenous communities [4].

Participatory research is an umbrella term that includes a wide variety of differing research approaches, broadly defined as “systematic inquiry, with the collaboration of those affected by the issue being studied, for purposes of education and taking action or effecting change” [5, p. 327]. Participatory action research (PAR) and community-based participatory research (CBPR) are two such approaches that are more widely recognized [5, 6]. Emerging alongside co-design philosophy, participatory research principles developed from social action research and emancipatory philosophy in the Americas [2]. With the increasing adoption of participatory approaches into the late 1900s, and being concomitant with incentivized funding for increasing inclusion of research participants in research processes, participatory research was deemed a philosophical research approach rather than a methodology alone [2]. With the development of specific sub-approaches such as PAR and CBPR, participatory research has expanded to serve the needs of specific communities and ensure consultation with people having lived experience as well as research beneficiaries from the beginning of the research pipeline.

These approaches embody co-design principles with their focus on including participants as proxy researchers, and on decentralized research “expertise.” This approach recognizes that knowledge from participants that the research will affect, rather than knowledge founded in Western institutions and academies, is valid and legitimate, and allows unparalleled insight into lived experiences [7, 8]. Privileging community knowledge and experience and recognizing community members as valuable consultants with whom to conduct research has been a key theme emerging from Indigenous embodiments of co-design and participatory approaches. Alongside shifting understandings of knowledge legitimacy, these approaches are well-aligned with Indigenous research foci.

Over the past decade, applications of co-design have increased exponentially in health-related research, policy, and practice, and they are often considered a gold standard of collaborative approaches [9]. Co-design approaches are underpinned by ideals of empowerment, collaboration, creativity, positive societal impact, and capability building [10], which are intended to be enacted through processes such as shared decision-making, sustained community engagement, and building equitable partnerships [1, 2, 11]. In essence, co-design is intended to recognize and leverage the value of consumers’ lived experiences on an equitable footing with the knowledge of professionals such as researchers, clinicians, and other experts. Co-design approaches are increasingly being used with priority and marginalized populations to address health disparities, as they offer the ability to include contextualized insights from consumers in solution-generating processes [12]. However, given the nebulous definition of co-design, real-world applications of this approach tend to vary and might not always achieve the intended ideals. In response, there are mounting calls to ensure that applications of co-design facilitate authentic and equitable collaboration and ensure benefits that are timely, meaningful, sustainable, and of value to the populations they are intended to serve [12].

Ensuring that co-design applications with Indigenous communities foster authentic collaboration and tangible benefit requires the development and implementation of co-design principles and practices that are determined with and by Indigenous communities. Given the enduring Western hegemony in research, this process must be grounded in Indigenist and decolonizing methodologies that prioritize Indigenous voices and worldviews [13]. There is a need to ensure that co-design is implemented with true participatory principles and that Indigenous control of and engagement in research is prioritized if the potential of co-design is to be realized [4].

Case Study: Development of Key Principles and Best Practices of Co-design with Indigenous Australians

To ensure that applications of co-design with Indigenous peoples are grounded in Indigenist methodologies, they must be guided by transparent, culturally safe, and decolonizing principles and practices. The development of such principles and practices is slowly beginning to happen, as the importance of research being done in the right way is increasingly recognized. Here, we describe an Australian case study that outlines the development of the key principles and best practices of co-design with Indigenous Australians within the broader health context.

In 2021, Cancer Australia, Australia’s peak national cancer control agency, began evaluating the early design and feasibility of a potential national lung cancer screening program (LCSP) to detect lung cancer at an early stage and thus improve patient outcomes. Given that lung cancer disproportionally affects Indigenous Australians, Cancer Australia was cognizant that equitable co-design processes would be needed in the design of any new screening program that would meet the needs of Indigenous Australians. The lack of a clear definition and guidelines around culturally appropriate co-design with Indigenous peoples led Cancer Australia to contact our team at The University of Queensland (UQ) with the goal of developing a set of evidence-based and lived-experience-informed key co-design principles and best practices with Indigenous Australians. The initial aim was to develop the principles and practices within a broad healthcare context and then embed them within the potential LCSP from its design and inception to ensure equitable uptake and benefit for Indigenous Australians. The development and content of these key co-design principles and best practices are briefly outlined below and are described in greater detail in the corresponding publications [14, 15].

Under the guidance of a leading Indigenous researcher in Indigenous cancer and wellbeing, a majority-Indigenous research team developed the key co-design principles and best practices with Indigenous Australians over two phases: a comprehensive review, followed by consultation with people having lived experience. Our UQ team conducted a comprehensive review to develop a draft set of principles and practices. Using a systematic search strategy, we searched: (1) peer-reviewed literature via academic databases, and (2) grey literature (including reports from First Nations organizations, government reports, toolkits, and guidelines) via Google, Google Scholar, and targeted searches of known key websites. Ninety-nine articles were included in the final analysis, which identified six key themes and 28 associated sub-themes relating to key principles and best practices for co-design with Indigenous Australians [15]. These findings formed the basis for consultation with people having lived experience in the second phase.

Informed by the findings of the comprehensive review, our UQ team conducted consultations with people having lived experience to refine and confirm the final key principles and best practices. Twenty-five people with lived experience from three key groups participated in online yarning circles. They included Indigenous cancer patients, carers, and family members; cancer policy experts and health care providers; and Indigenous researchers from various health disciplines with experience in co-design. They provided feedback on the draft principles and practices, identifying items that should be prioritized, restructured, or deleted, and providing input on concepts they considered to be missing.

Along with strong Indigenous leadership in the UQ research team, the First Nations Co-design Working Group and Cancer Australia’s Aboriginal and Torres Strait Islander Cancer Control Leadership Group provided overarching project governance. The former included Indigenous Australians with experience in health across varying disciplines, and the latter included leaders in Indigenous health, research, and policy, as well as consumers affected by cancer. The UQ research team and governance groups engaged in Collaborative Yarning Methodology (CYM) [16] across both phases. CYM and thematic analyses were used to identify the final set of six key principles and 27 best practices for co-design in health with Indigenous Australians. The six key principles were identified as Indigenous leadership, culturally grounded approach, respect, benefit to community, inclusive partnerships, and transparency and evaluation. An outline of these key principles and their associated best practices are provided in Table 64.1.

Table 64.1 Key principles and best practices for co-design in health with First Nations Australians
Full size table

In May 2023, Australia’s Minister for Health and Aged Care formally announced that the new LCSP would be awarded. The co-design key principles and best practices identified and developed by our UQ team will be used to guide the development and implementation of the new LCSP. Furthermore, Cancer Australia has plans to develop a co-design toolkit in plain English to enable accessibility of these key principles and best practices to support community members, researchers, practitioners, and policymakers in designing and implementing their own co-design projects respectfully with Indigenous peoples.

Conclusions

The use of co-design is increasing in the cancer-control sector and the field of healthcare more generally. However, the lack of a clear definition or guidance on how to enact co-design in a way that is non-tokenistic has led to concerns about its application. Clear principles and practices of co-design with Indigenous peoples are urgently needed to ensure that Indigenist and decolonizing methodologies are enacted in future efforts to improve health outcomes for Indigenous peoples. The way in which such principles and practices are operationalized must be place-based and tailored to the specific issue at hand, giving rise to exciting opportunities for the co-creation of new knowledge—Ganma—by working together in creative and dynamic ways. Importantly, while many collaborative approaches with Indigenous peoples globally share a focus on decolonizing methodologies that center on Indigenous worldviews and knowledge systems, those interested in utilizing co-design must work with local Indigenous groups to decide on appropriate local-level guiding principles. The implementation of these key principles and best practices of co-design will pave the way for culturally safe and effective co-design projects that empower Indigenous peoples globally to drive solutions and better healthcare outcomes in their communities. Doing so requires that governments, institutions, and organizations relinquish long-standing power differentials to enable truly equitable and authentic co-design approaches.