Collective intelligence to solve complex health challenges facing Indigenous peoples: organ donation and transplantation

Abstract

The First Nations and Métis Organ Donation and Transplantation Network (the Network) facilitates Indigenous-driven, culturally-informed, and safe research, policies, education, and advocacy regarding organ donation and transplantation through the building of collective intelligence among Indigenous peoples in Canada. The Network’s think tank comprises Indigenous Elders, thought leaders, and persons with lived experiences of organ donation—living donors and organ recipients—as well as healthcare professionals, outreach workers, and university-based researchers. The Network responds to the failure of governmental institutions to reduce health disparities facing Indigenous peoples, and the dispersal of Indigenous collective intelligence caused by changing federal or provincial and territorial leadership and priorities. The collective intelligence of Indigenous peoples regarding end-stage organ failure and organ donation and transplantation is central to improving patient experiences, increasing the number of Indigenous organ donors and recipients, and finding pathways for advancing healthcare reforms that prevent and treat end-stage organ failure.

Introduction

This article discusses the First Nations and Métis Organ Donation and Transplantation Network (the Network), and its goal of building collective intelligence among Indigenous peoples. Canada has three distinct Indigenous groups, First Nations, Métis, and Inuit, with the network currently focused on Métis and First Nations. The network was established in the spring of 2019 and aims to explore the diverse and intersecting priorities, values, knowledge, and lived experiences of Indigenous and non-Indigenous thought-leaders and stakeholders. The goals of the Network are to then facilitate Indigenous-driven, culturally informed, and safe research, policies, education, and advocacy regarding organ donation and transplantation (ODT). Although the Network is based in Saskatchewan, Canada, it is growing into an international network of Indigenous and non-Indigenous thought leaders and stakeholders; its members include Indigenous transplant recipients, living donors and their family members, Elders, researchers, policymakers, advocacy groups, nephrologists, transplant physicians and surgeons, and healthcare leaders and staff.

Over the past 3 years, our research has focused on Indigenous peoples’ cultural understandings of ODT, and on identifying the gaps and barriers in public health education, diagnostics, and healthcare delivery that prevent Indigenous peoples in Canada from becoming organ donors or recipients. The present article discusses the rationale behind the creation and implementation of the Network’s think tank, an alternative Indigenous-driven body that informs decision-making regarding the complex health and social issues faced by First Nations and Métis peoples in Saskatchewan, as well as Indigenous peoples generally in Canada.

Using ODT as an example, we discuss the value of fostering and supporting collective intelligence as a means of generating truth-telling and pathways to reconciliation in healthcare as well as across the human service sector generally. The purpose of the Network’s think tank is to create a culturally safe space for thoughtful, constructive dialogue, and debate over time by building collective intelligence focused on an area of health important to Indigenous peoples. The result is a deeper understanding by those participating—Indigenous and non-Indigenous—of contemporary and historical socio-political intersections that not only impact how healthcare is delivered and received by Indigenous patients and their caregivers but also drive and sustain health inequities across Indigenous populations. We believe building collective intelligence through an Indigenous-driven think tank model prioritizes Indigenous voices and lived experience, and grounds voices and experience in this larger historical socio-political landscape in which Indigenous people access healthcare services.

First Nations and Métis organ donation and transplantation network

The Network has operated for 3 years and is funded by a set of multi-year research grants. It operates under the umbrella of the Saskatchewan Network Environments for Indigenous Health Research (NEIHR) Network, and the NEIHR National Coordinating Centre that supports the nine NEIHRs across Canada, funded by the Canadian Institutes of Health Research. The Network is also a partner of the Canadian Donation and Transplantation Research Programme and the Canadian Blood Services and is currently partnered with Indigenous and non-Indigenous researchers and healthcare leaders from across Canada, and some from the United States, Aotearoa (New Zealand), and Australia, with the latter representing an endeavour to expand the Network internationally. The Network is led by Indigenous members, chaired by Indigenous members and the role of researchers, particularly non-Indigenous researchers, is that of observers who contribute to discussions but do not lead them.

A central aim of the Network is to develop a research, policy, and knowledge-mobilization (KM) programme that is grounded in the collective intelligence of Indigenous peoples. Through this programme, Network members can use their lived experiences, cultural teachings, and expertise to facilitate exchanges with Indigenous people who have lived experiences of ODT as well as exchanges with medical, legal, policy, research, and advocacy experts. The Network’s think tank comprises First Nations and Métis Elders, thought leaders, and people with lived experiences of organ donation—living donors and organ recipients—as well as healthcare professionals, outreach workers, and university-based researchers. Each think tank member, except paid professionals, receives honoraria and travel expenses for in-person meetings; the group meets once a month for 4 hr, however at present, because of restrictions relating to the COVID-19 Pandemic, the group meets once a month online for 3 hr, receiving honoraria for this time. Think tank meetings follow an agenda that includes items relating to the everyday running of the Network and presentations by one or two expert guests. Recordings and notes of the meetings are retained for review and analysis. Findings from the Network meetings have informed the content of this article and other KM activities.

To arrange the abovementioned presentations, the Network’s think tank identifies Indigenous patients or family members who have relevant lived experiences, or Indigenous and non-Indigenous professionals with expertise in health, legal, and ethical areas related to ODT, and invites them to present to the think tank; during these presentations, there is a free exchange of questions, information, and knowledge. After their initial presentations to the Network, expert guests commonly return at later dates to provide updates, to present on different subject areas, or to attend as observers. Over the past 3 years, the Network has hosted national and international researchers, transplant surgeons and physicians, kidney specialists, government representatives, transplant advocacy groups, legal and policy experts, and First Nations and Métis people with relevant lived experiences. In addition, two public online forums have been hosted by the Network, and there are plans for further national and international online forums. Guest speaker sessions have also led to the development of connections between our network and other potential guest experts. The rate at which these connections have occurred has accelerated with time and, several national leading researchers, clinicians, service and advocacy groups from different regions of Canada have availed themselves of open invitations to attend the Network’s regular meetings. Medical experts have reported that direct access to Indigenous thought leaders, Elders, and people with relevant lived experiences is an invaluable resource, as these individuals can raise questions, highlight medical challenges, and present ideas for discussion, debate, and direction from Indigenous perspectives.

Over the past 3 years, the Network’s KM programme has expanded through presentations, publications, participation of Network members in ODT advisory groups, and the provision of ongoing updates to Métis and First Nations health leaders. For example, since the creation of the Network in 2019, members have given over 25 presentations, mostly to national audiences. The presentations have been given by people with lived experience of ODT and by the research leads. One of the Network members with lived experience of ODT was also featured in a Saskatchewan Ministry of Health public campaign encouraging ODT; the video in question, which was released in 2021, is designed to encourage Indigenous people in Saskatchewan and beyond to consider organ donation (Government of Saskatchewan, 2021).

COVID-19 has negatively impacted the Network’s advancement, as it has necessitated the transfer of all activities to online settings. This has meant that some of the think tank members have been unable to participate fully, or even at all. Such limitations are largely due to poor internet capabilities, with some participants only able to join meetings and forums by telephone. However, the COVID-19 Pandemic has also provided the Network with opportunities to expand nationally and internationally, as Indigenous participants are now becoming more comfortable and confident using online platforms.

The Network’s efforts are primarily situated at intersections, established, and emerging, where the worldviews of Indigenous peoples, including their experiential knowledge, clash, intersect, and intertwine with western understandings and practices. The inclusion by the Network of diverse Indigenous experiential, cultural, and professional vantage points highlight complexities regarding biomedical, ethical, legal, and health-system factors that transcend western priorities and that are key for improving healthcare for Indigenous peoples. The Network’s focus on ODT is intended to produce transformative ideas and approaches that draw attention to the unique experiences of First Nations and Métis patients and families, and thereby improve public health education and healthcare policies, service delivery, and research (Tait, 2022).

Collective intelligence

According to Chikersal (2017), collective intelligence can be defined as “a group or a team’s combined capacity and capability to perform a wide variety of tasks and solve diverse problems” (The Oxford Review Encyclopaedia of Terms, n.d., para. 1). Additionally:

The primary difference between IQ (individual intelligence) and CQ (collective intelligence) is the social dimensions and the ability of groups to achieve unity of purpose, action and thought. Teams with high levels of CQ achieve a state of interdependence and flow when they are working together. (The Oxford Review Encyclopaedia of Terms, n.d., para. 2)

Applying this definition, the Network acknowledges that the collective intelligence of our Indigenous ancestors pre-European contact was not only sophisticated but also foundational to Indigenous peoples’ survival in Canada’s harsh climates. Ancestral knowledge is embedded in Indigenous cultures, languages, knowledge, and wisdom, giving meaning to the ways in which First Nations and Métis people live and engage in diverse social and natural environments. Our Network adopts collective intelligence as not necessarily a concept describing a team dynamic, but rather as an ideal to strive for, one inclusive of multiple forms of cultural, spiritual, and intellectual intelligence derived from traditional and contemporary collective work. While the team dynamic is always key to the work of the Network, the goal of the Network is to generate interest and discussion outward, building collective intelligence in ODT across First Nations, Métis, Inuit, and international health networks.

Collective intelligence and the colonial oppression of Indigenous peoples

Across Canada, suppression of the collective intelligence of Indigenous groups persists through government, institution, and industry control over resources and knowledge production. Such suppression occurs in the healthcare sector, although in recent years there have been moves towards increased Indigenous self-determination and governance over healthcare, particularly primary health (Allen et al., 2020). In discussing collective intelligence, Kanu argues,

Canada, as a knowledge society, should be drawing on its pool of collective intelligence, including the indigenous knowledge of Aboriginal peoples, not only for more success in a competitive global environment, but also because collective intelligence represents the collective, holistic knowledge that a society holds and acts upon in order to enhance social wellbeing. (2016, p. 148)

Kanu (2016) also cautions that, along with including Indigenous perspectives at national, provincial, and territorial levels, it is also necessary that local socio-economic contexts foster inclusion of the collective intelligence of Indigenous peoples. Meanwhile, Lefkoff (2015) writes that, as a society, “we forfeit the advantage of collective intelligence when structures of command and control suppress distributed leadership” (p. 78). He also argues that it represents a missed opportunity if our social systems fail to utilize our collective intelligence as a nation; this would include the collective intelligence held by Indigenous groups and contained in Indigenous languages, cultures, and experiences. Notably, the traditional knowledge held by Indigenous groups tends to differ from mainstream knowledge in that it privileges interconnectedness and values non-linear, non-hierarchical thinking (Lefkoff, 2015).

Within the broader national discourse regarding health inequities between Indigenous peoples and the rest of Canada, there is consensus, even among federal, provincial, and territorial governments that Canada fails to provide equitable healthcare to Indigenous peoples (Browne et al., 2016; Greenwood et al., 2018; Tait et al., 2021). The colonial experiences of Métis, First Nations, and Inuit peoples are depicted in their narratives of devastating losses of culture, language, and lands, and the breakdown of traditional family and collective life as well as in their narratives of resistance, resilience, and efforts to reclaim, protect, and sustain First Nations, Métis, and Inuit ways of knowing and being. It is this history that has created and largely sustains the health and social inequities that exist today in Indigenous populations (Czyzewski, 2011).

While often not acknowledged, government legislation, policies, and the actions they generate remain the largest social determinant of the health of Indigenous peoples across Canada (Smylie & Phillips-Beck, 2019; Tait, 2013; Tait et al., 2019). Historically, government legislation and policies created and perpetuated the Residential School system, which continued to operate even after evidence of widespread sexual and physical abuse and deaths of Indigenous children at the schools was repeatedly presented to Canada’s political leaders (Tait et al., 2021). Child welfare legislation and policies, the Indian Act 1876, and the undermining of Métis, First Nations, and Inuit rights in health legislation and policies serve as contemporary examples of the Indigenous marginalization and oppression that directly contribute to the current health disparities. The COVID-19 Pandemic further highlighted the level of health and social inequities experienced by Indigenous populations across Canada; for example, during the lockdown period, large numbers of Indigenous peoples struggled to access the healthcare services they required (Bratina, 2021; Public Health Agency of Canada, 2021; Spence et al., 2020).

Responses by Canadian federal and provincial and territorial governments to complex health issues experienced by Indigenous peoples continue to marginalize the experience of Métis, First Nations, and Inuit peoples and their suggestions regarding methods of decreasing inequities. Despite national initiatives such as the Royal Commission on Aboriginal Peoples (RCAP) (Government of Canada, 2010), the Truth and Reconciliation Commission of Canada (2015), and a large body of evidence in the form of inquiries, research reports, and policy documents (National Collaborating Centre for Indigenous Health, 2019; Public Health Agency of Canada, 2021; Spence et al., 2020; Turpel-Lafond, 2020), provincial, territorial, and federal governments have failed to mitigate, to any meaningful degree, health disparities among Indigenous populations (Czyzewski, 2011; Kim, 2019; Public Health Agency of Canada, 2021; Richmond & Cook, 2016; Wylie & McConkey, 2019). The 20 years between the release of the RCAP recommendations and the release of the TRC’s Calls to Action saw only moderate improvements to the delivery of public health and healthcare services to Indigenous peoples (Truth and Reconciliation Commission of Canada, 2015). Two notable exceptions, however, were the Aboriginal Healing Foundation (AHF) and the National Aboriginal Health Organization (NAHO), which were funded by the Canadian Federal Government after the release of RCAP and designed and developed by First Nations, Métis, and Inuit. The AHF and NAHO were both national Indigenous health, healing, and wellness enterprises that, despite being funded by the federal government, were governed and run by Indigenous peoples. The AHF focused on supporting community-based healing initiatives across Canada and developing a body of research and evaluation reports that were distributed to Indigenous communities and organizations. Meanwhile, NAHO, which housed First Nations, Métis, and Inuit health research and policy centres, focused on addressing health disparities among Indigenous peoples through distinction-based healthcare reform, research, and policies that utilized the collective intelligence of First Nations, Métis, and Inuit peoples across Canada. The momentum and success of the AHF and NAHO had a nationwide impact; however, despite their innovative contributions, both organizations were forced to close their doors due to a lack of federal reinvestment, the AHF in 2014 and NAHO in 2012. This closure resulted in a dispersal of the Indigenous collective intelligence that had been generated and was so greatly needed for reconciliation.

In the years after their closing, the bank of collective intelligence fostered nationally by the AHF and NAHO was, while not entirely lost, greatly diminished. The First Nations and Inuit Health Branch of Health Canada (FNIH-Health Canada) (Health Canada, 2012), along with pan-Canadian health organizations such as the Mental Health Commission of Canada, the Canadian Centre on Substance Abuse and Addiction, the Canadian Institute for Health Information, the Canadian Foundation for Healthcare Improvement, and the Canadian Patient Safety Institute, were left to fill the void created by the closing of the AHF and NAHO; however, there was virtually no meaningful uptake by them in what the AHF and NAHO had built across the country in Indigenous community contexts (Forest & Danielle, 2018; Tait et al., 2021). For example, the number and quality of community-driven healing and wellness initiatives in Indigenous communities greatly diminished as the AHF funding came to an end, creating large gaps across Canada in healing and wellness supports and services directed towards Indigenous peoples. The gains made in distinctions-based health research and policy development that were driven by the First Nations, Métis, and Inuit centres housed at NAHO were undermined, as FNIH-Health Canada, and the pan-Canadian health organizations simply lacked the capacity and experience to continue this work in meaningful ways.

The TRC’s Calls to Action, released in 2015, renewed the call by Indigenous peoples for large-scale investment in the healthcare services provided to Indigenous peoples (Truth and Reconciliation Commission of Canada, 2015). The lost momentum in healthcare reforms in the years between the closing of the AHF and NAHO and the release of the TRC’s Calls to Action had proven to be devastating, with the health disparities experienced by Indigenous peoples seeming to increase annually (Hajizadeh et al., 2018; Kim, 2019). While both the AHF and the NAHO created and nurtured the collective intelligence of Indigenous peoples through applying strength-based strategies that capitalized on positive intersections between Indigenous knowledge and biomedical research, policy development, and healthcare delivery, the inherent value of this work to Indigenous peoples, and Canada generally, was for the most part dismissed by federal and provincial governments. Seven years after the release of the TRC’s Calls to Action, there is limited evidence that this most recent effort has produced meaningful reform and reduction of health inequities for Indigenous populations. As a result, Indigenous leaders and TRC Commissioners have criticized federal, provincial, and territorial governments for a lack of progress. In June 2022, this criticism pushed the Federal Government to table Bill C-29 in the House of Commons, which establishes an independent, non-partisan council that reports annually to Parliament on the state of reconciliation and provides recommendations to all levels of government and Canadian society (Stefanovich, 2022).

The Network is a much smaller example of the creation and growth of Indigenous collective intelligence than the examples given above. However, our Network shares the vision of the AHF and NAHO in that we seek the growth of collective intelligence regarding healthcare challenges facing Indigenous peoples. We believe our ODT think tank is an innovative and necessary knowledge-building exercise that actively contributes to Indigenous-driven healthcare reforms. We envision that the lessons we learn from our growth and nurturing of collective intelligence serves as an example of pragmatic reconciliation in healthcare; one that brings together key thought leaders—Indigenous and non-Indigenous—to consider innovative solutions to address underserved and complex areas of Indigenous health.

Upstream considerations

Canadian society prides itself on being a world leader in human rights, social welfare, healthcare, and socioeconomic development; however, for many First Nations, Inuit, and Métis peoples, the daily contexts in which they live are similar to those found in the world’s poorest countries (Daschuk, 2013). Housing, water, and food insecurities, along with limited opportunities for material advancement, exacerbate health and social disparities among Indigenous peoples. Compounding this situation, much of the social suffering experienced by Indigenous peoples goes virtually unseen and unacknowledged by the rest of Canadian society (Czyzewski, 2011). As with other healthcare issues facing Indigenous peoples, prevention and treatment of end-stage organ failure is hindered because of geographical, jurisdictional, and other challenges that are outside the control of local Indigenous healthcare leaders, medical practitioners, and at-risk individuals.

A central reason for the inadequate efforts to address such health inequities is federal and provincial governments’ under-resourcing of public health initiatives tasked with reducing risk and improving health outcomes (Pan-Canadian Public Health Network & Public Health Agency of Canada, 2018; Tait, 2008). Each fiscal year, funding is awarded to public health programming, and this funding is used for activities such as stakeholder meetings, research, training of frontline workers, and pilot intervention projects (Tait, 2008). Government ministries and their departments, as well as non-government bodies—Indigenous or non-Indigenous— oversee these initiatives and, generally, are required to spend the allotted funding within a given fiscal year, regardless of the time of year it is awarded. For initiatives relating to Indigenous groups, this means most activities and deliverables must be quickly organized by Indigenous communities or organizations to meet the tight timelines. Interventions are commonly described as pilot projects and, while given multi-year contribution agreements, generally do not extend beyond 1 to 4 years and require significant reporting by those responsible for delivering the services (Tait, 2008). Although some initiatives can produce positive outcomes at local or regional levels, this does not mean their funding will be renewed or that the associated knowledge will be mobilized by the health system. It is also common for best practice initiatives described in the health research literature to be applied in a diluted form because of under-resourcing by treasury branches of governments. While the above description is a generalization, for decades Indigenous peoples across Canada have witnessed the spending of millions of dollars annually on their behalf in exactly this way (Tait, 2008).

Despite a limited reduction in health disparities among Indigenous populations, governments continue to follow unsuccessful entrenched pathways of public health and primary care funding, making limited attempts to implement positive adjustments. The failure of existing strategies to prevent or reduce the onset of complex health issues among Indigenous peoples is reinforced by the ability of governments to be self-vindicating (Hacking, 2010) in the face of their ongoing failure to decrease health disparities among Indigenous populations. As national and provincial political success never hinges on whether a government can improve the health and social well-being of First Nations, Métis, and Inuit peoples, real transformative change remains absent, despite the efforts of Indigenous leaders and communities to mobilize change. Under-resourcing of health promotion and public health prevention efforts at local levels directly contribute to the persistence of health disparities. However, while increased investment is urgently needed, so too is attention to unaddressed social conditions—specifically, food and water insecurity, overcrowded housing, intergenerational trauma, and gaps and barriers in education and employment— and to an overburdened Indigenous workforce across the human service sector.

Our Network’s approach of fostering Métis and First Nations peoples’ collective intelligence as a foundational strategy for transformational change provides an alternative to accepting entrenched practices that have been proven to produce limited positive and sustainable change. We argue that there is existent evidence that fostering Indigenous collective intelligence, for example, the work of the AHF, NAHO, First Nations Family and Caring Society, Thunderbird Partnership Foundation, First Peoples’ Wellness Circle, All Nations Healing Hospital, First Nations Information Governance Centre, and the National Centre for Truth and Reconciliation, leads to transformative change that is fundamentally different to that which has resulted from non-Indigenous government departments, ministries, and health authorities having oversight of decision-making resources and service provision. Unfortunately, Indigenous initiatives that are successful in growing collective intelligence and producing transformational change are vulnerable to government interference or disinvestment, often at times when political leadership changes at federal and provincial, and territorial levels, as happened with the AHF and NAHO when federal leadership changed in the early 2000s. Notably, disinvestment by governments is not based on research or evaluation evidence that indicates that closure is warranted, but rather flawed and failed commitments to reconciliation.

Conclusion

Addressing health inequities experienced by Métis, Inuit, and First Nations peoples is a complex, pan-Canadian challenge. For Indigenous patients living with end-stage organ failure, this challenge can be compounded by a multitude of factors, including where they live, whether they are status or non-status First Nations or Inuit or are Métis, their family and social networks, and their socioeconomic and overall health status. As described in this paper, there are limited data documenting rates of end-stage organ failure, transplantation, and donation among Indigenous populations across Canada. This paucity of data has meant that improving healthcare systems that directly address care and support for Indigenous patients, and their families, living with end-stage organ failure receives, at best, minimal attention.

The Network was created in 2019 to raise awareness of the needs of Indigenous patients, families, and communities. The Network was also established as an example of the value of providing safe, supportive environments where Indigenous and non-Indigenous people with relevant lived experiences, thought leaders, Elders, medical and research experts, advocacy groups, and other stakeholders can collaborate towards transforming healthcare systems to better meet the needs of Indigenous peoples. Following direction by Justice Murray Sinclair, Lead Commissioner for the TRC, the Network has invested in micro-reconciliation: the formation of meaningful and lasting relationships between Indigenous and non-Indigenous people to advance the goal of reconciliation (Tait et al., 2019).

The initial three years of the Network has, as hoped, resulted in strong partnership development with key organizations and networks and leading medical and research experts in the field of ODT. A lesson learned from the Network’s initiative is how deeply committed Indigenous thought leaders, Elders, people with relevant lived experiences, and medical and research experts are to forming partnerships with non-Indigenous medical, research, and advocacy experts when the context is intended to be ongoing, Indigenous-led, and driven, and to provide a respectful, safe space where Indigenous lived experiences and biomedical knowledge are valued in terms of their problem-solving potential.

The work of the Network has also resulted in the development of foundational cultural and experiential understandings of the priorities of First Nations and Métis peoples in Saskatchewan regarding end-stage organ failure and ODT, including among both living donors and families of deceased donors. This initial work shows that historical, cultural, and socio-economic factors unique to the respective First Nations, Inuit, and Métis peoples can be key considerations for preventing end-stage organ failure and improving patient care for those living with organ failure and who are on transplant lists. It is also clear that public health education that is grounded in the respective cultures of different Indigenous nations, and that includes the use of Indigenous languages, is important for promoting ODT among First Nations, Inuit, and Métis groups.

The initial work of the Network highlights the value of growing collective intelligence to address complex health issues. Without targeted attention to end-stage organ failure, transplantation, and donation, key information gaps will persist, and the experiences of Indigenous patients living with end-stage organ failure will remain relatively invisible and unaddressed. Moreover, without targeted efforts, Indigenous populations’ general knowledge regarding ODT will also remain low. Data that track Indigenous identity in relation to end-stage organ failure, transplantation, and donation are key in this context, and should not be ignored by governments and health authorities because of misconstrued ideas regarding its value and purpose. Situating these data under Indigenous principles of data sovereignty is key, as is Indigenous-led data collection, analysis, and policy development.