Improving health research among Indigenous Peoples in Canada

How has the history of Indigenous health research in Canada shaped current governance?

Many Indigenous people are highly involved in health research. However, many remain hesitant to participate, given the historical context of research involving Indigenous people in Canada.⁷ Examples of historical research atrocities committed by non-Indigenous researchers are nutritional experiments and BCG vaccine trials, which are outlined in Boxes 1 and 2. Although there may have been knowledge accrued from these studies, as with Nazi Holocaust experiments and the Tuskegee syphilis study, the motivations, rationale and methods involved were highly unethical and have bred a culture of mistrust of health research.

In response to this history of unethical research, the Royal Commission on Aboriginal Peoples outlined the first statement on Indigenous research ethics.⁹ This, and guidelines from the Canadian Institutes of Health Research, among others, outlined in Box 3, informed the current Tri-Council policy statement on Indigenous health research and ethical conduct of research in Canada.^5,13 The Tri-Council policy statement describes the misappropriation and abuse of Indigenous knowledge, property, culture and biological samples as well as “failure to share data and resulting benefits; and dissemination of information that misrepresented or stigmatized entire communities.”⁵ The chapter “Research involving the First Nations, Inuit and Métis Peoples of Canada” in the Tri-Council statement is self-described as “a step toward establishing an ethical space for dialogue on common interests and points of difference between researchers and Aboriginal communities engaged in research,” and it includes a requirement for community engagement, recognition of diverse interests within communities, and respect for customs and traditions — including research traditions.⁵ Indigenous communities and organizations may also have ethical guidelines for research of their own, which must be considered along with the tenets of the Tri-Council policy statement.⁵ These guidelines act as a starting point for researchers to understand the complex array of concepts important to conducting ethical Indigenous health research.

Although research that is obviously unethical is no longer conducted, problematic issues still arise. For example, a 2014 review found a considerable lack of community engagement in research on neurodevelopmental disorders among Indigenous children in Canada.² Of 52 included papers, only three used community-based participatory research methodologies, and one 1999 study, conducted without consent, was stopped at the request of the community.^2,15 It is worth highlighting that 51 of the 52 Indigenous neurodevelopment studies focused solely on fetal alcohol spectrum disorder (FASD),² despite higher incidence of autism spectrum disorder, and similar incidence of cerebral palsy to FASD in North America. This skewed research in only one area of neurodevelopmental disorders can be highly stigmatizing.¹⁶ To date, no other systematic review examining community engagement in Indigenous health research has been identified, although we are currently undertaking an assessment of Indigenous participation in pediatric research in Canada. As Indigenous participation improves, researchers should continue to critically examine the risk of tokenism and consider whether the involvement is truly meaningful.¹⁷ Throughout this analysis, we delve more deeply into present-day issues of nonintentional harms, such as those to community values, autonomy and justice.

Why are Indigenous ways of knowing resisted?

Incorporation of Indigenous methodologies and methods into research is increasingly recognized as critical to generating results that truly represent the perspectives of Indigenous participants. ^1,18 Their use recognizes Indigenous Peoples as having the tools to best address concerns of their own communities. Several qualitative studies have successfully used culturally appropriate methods of data collection, as we outline in Table 1.²⁹

However, Indigenous researchers continue to face pressure to prove these methodologies and methods rigorous and credible using Western standards.¹ Often Western funding bodies cite concerns about the validity of Indigenous methodologies, methods and epistemologies.³⁰ This imparts a pressure to assimilate.¹ Some non-Indigenous researchers may unconsciously feel Indigenous knowledge is threatening to Western knowledge, as different interpretations of the same issue may arise from the two epistemologies.³⁰ However, the defensive response to “protect accepted paradigms” fundamentally contradicts what research is intended to do — discover new knowledge.³⁰

Which research methodologies have been used successfully in Indigenous health research?

One commonly used methodology is community-based participatory research. Motivated by the desires and interests of the communities being studied, community-based participatory research includes active involvement of those affected by the research, in every step of the project.⁵ Employing a partnership approach shifts the research toward priorities that are practically meaningful to the community, with increased social and contextual validity.³¹ Whereas a partnership approach may demand deeper reflection, accountability and effort, it results in research with a more substantial positive social influence.^31,32

When used with Indigenous communities, community-based participatory research is about restoring power and control, and indigenizing the research process. Indigenizing can be seen as an approach that not only draws upon existing structures, but privileges and validates Indigenous narratives and systems.⁷ When Indigenous health research involves non-Indigenous researchers and Western methodologies, there are inherent power relationships derived from colonization that must be acknowledged.³³ Where research decisions are taken without the meaningful participation of Indigenous researchers, organizations, traditional knowledge holders and communities, there is risk of harm through issues such as misrepresentation or conducting research in a disrespectful way.⁵ Furthermore, engagement must consider overburden of communities and research fatigue, which threatens effective involvement and inhibits community control.^33,34

The design and methods of a 2009 qualitative study investigating storytelling as a research method to understand the Inuit experience of living with diabetes offers an example of meaningful community engagement.³⁵ The research team held community brainstorming sessions and had a community steering committee that assisted with grant proposals, survey tool appraisal, logistic guidance, hiring local assistants, reviewing results, translation services and directing community knowledge translation efforts.³⁵ Working with appropriate leadership groups, this project incorporated methods more culturally appropriate for the Inuit community than traditional interviews.³⁵ The community was able to benefit not just from the results of a research project, but also from the research process itself. Data collection methods such as photovoice, symbol-based reflection, sharing circles and storytelling have also been used successfully in qualitative studies, as outlined in Table 1.²⁹

Indigenous methods have been used within Western methodologies, such as grounded theory, or within Indigenous methodologies, such as Kovach’s methodology based on Nêhiýaw Kiskêýihtamowin (Plains Cree knowledge).^20,29 Qualitative tradition has been particularly instrumental in integrating Indigenous and Western ways of knowing, because many qualitative methodologies embrace the existence of multiple truths and subjectivity of participant experience. ²⁹ As Indigenous methods and methodologies become accepted in the qualitative tradition, we encourage researchers to look to their Indigenous colleagues for guidance regarding how these may be integrated in quantitative research. Indigenous Statistics: A Quantitative Research Methodology is the first book published on Indigenous quantitative methodologies and provides one of few leading examples.¹⁹ Described therein is an approach to inclusion of the Indigenous standpoint in quantitative methodologies and methods, including the example shown in Table 1.

What can be used to avoid “deficit discourses” when undertaking Indigenous health research?

A deficit discourse “describes a mode of thinking that frames and represents Aboriginal identity in a narrative of negativity, deficiency and disempowerment.”³⁶ There is a danger, especially in the field of health, of conflating the social problems Indigenous people face as a result of social, economic and political marginalization experienced since colonization, with cultural characteristics of Indigenous Peoples.³⁷ Non-Indigenous health practitioners may label social problems as “Indigenous problems” through failure to recognize the association between such problems and recent Indigenous history.⁷ Research that describes health deficits without providing historical context promotes a deficit discourse. Health researchers should be aware of this framing, how research may perpetuate it and how it leads to stereotyping of Indigenous Peoples in wider society.

Further than reframing deficit narratives in the context of colonization and westernization, researchers could take a strength-based approach that capitalizes on the capacities, abilities, knowledge and talents that already exist in Indigenous communities. ³⁷ For example, a 2016 qualitative photovoice study framed the positive influence on health and well-being from strong intergenerational relationships, providing a strength-based discourse on their analysis of intergenerational influences on health.²⁸

How can non-Indigenous health researchers act as allies to Indigenous Peoples?

Allyship is an active role or process focused on eliminating social inequalities that allies benefit from, or extending these benefits to marginalized people.³⁸ A non-Indigenous person cannot be an expert on Indigenous issues, and cannot speak for Indigenous Peoples, but can strive to be an ally.³⁹ However, only Indigenous people can determine whom they consider an ally. Allyship requires a willingness to make mistakes and to be uncomfortable, as well as an ability to step aside and allow Indigenous people to lead.³⁹

In health research, Indigenous allyship includes working to eliminate barriers to Indigenous scholars. Examples of this include using positions of power to pressure prominent journals to accept Indigenous methodologies as valuable, or supporting Indigenous scholars to take leadership positions in research projects. Allies should also develop meaningful relationships with Indigenous people and communities, ensuring a sense of accountability on the part of the researcher to their participants and communities unto which the research reflects.^38,40 Meaningful relationships are based on trust, time, personal risks, interaction, reciprocity and open-minded listening.^39,41 Despite the competitive nature of academia with regard to authorship positions, academic appointments and funding, allyship also often means taking a supportive rather than leading role in projects and publications.³⁸

Allyship can be thought of as a reflexive process.³⁸ In the qualitative tradition, reflexivity, defined as thoughtful self-awareness, is a tool that contributes to the trustworthiness and integrity of some methodologies.⁴² Being a reflexive non-Indigenous researcher may mean making a conscious effort to transcend one’s worldview and accepting that there are truths different from one’s own. Reflexivity requires a constant questioning of one’s beliefs, assumptions and motivations, and consideration of how these affect the research.⁴² Allyship has been described as a process, “as allyship requires one to constantly cast a critical eye on themselves.”³⁸

A 2016 study informing Inuit community-based HIV and sexually transmitted infection prevention and sexual health promotion programming is one example of successful allyship in research.⁴³ Here, the author employed Indigenous methodologies and methods, drawing upon Inuit Qaujimajatuqangit (Inuit worldview), postcolonial theory, community-based participatory research principles, and a two-eyed seeing framework (Table 1).⁴² High rates of sexually transmitted infections are identified in the article but contextualized within colonization and westernization. ⁴³ The investigator identified and positioned her role in the community, used an advisory committee, and received funding from the Kugluktuk Hamlet Council, ethics approval from a University Ethics Review Board and a Nunavut research licence — all indicating support from key actors.⁴³ An Indigenous storytelling method was employed for data collection, with the understanding that “Inuit women are experts in their own lives.”⁴³

Conclusion

We’ve explored some concepts of particular importance when engaging in Indigenous health research, particularly from the position of a non-Indigenous health researcher, to help researchers understand the historical and present context of this field. Engaging Indigenous worldview and values, specific to the group(s) one hopes to collaborate with, is critical to producing research with meaningful findings from participant perspective. Research with Indigenous people and communities demands thorough and continuous reflection, as well as accountability to participants. Table 2 outlines suggestions for researchers hoping to participate in constructive Indigenous health research.