Integrating a Focus on Aboriginal Health Research in the Development of the Canadian Institutes of Health Research

Executive Summary

Central Issue:

Consideration of how Aboriginal Health should be integrated into the design of the CIHR is an important priority for several reasons:

  • Aboriginal people suffer the worst health conditions of all Canadians and a better understanding of the determinants, experience, and promotion of health and wellness, and response to illness, in Aboriginal communities is essential.
  • The Aboriginal population is young and growing rapidly. Unless research is directed towards discovering new and effective approaches to improving the health of Aboriginal communities, the social and economic costs of the high illness burden in Aboriginal communities will escalate.
  • Aboriginal people have a unique historical and political relationship with the Canadian State that justifies consideration of their unique entitlement, which is distinct from other stakeholder communities.

Determination of Research Need

Aboriginal people bear a disproportionate burden of illness in Canada. Some of these health problems have been highlighted in the Royal Commission on Aboriginal Peoples Report (1996):

  • Life expectancy at birth is about seven to eight years less for Aboriginal people than for Canadians generally.
  • For infants, the death rate is about twice as high as the national average. There are also high rates of injury and accidental death among Aboriginal children and adolescents.
  • Infectious diseases of all kinds are more common among Aboriginal people than others.
  • The incidence of life-threatening degenerative conditions such as diabetes, cancer, and heart, liver and lung disease – previously uncommon in the Aboriginal population – is rising.
  • Overall rates of injury, violence and self-destructive behaviour are disturbingly high.
  • Rates of overcrowding, low educational attainment, unemployment, welfare dependency, conflict with the law and incarceration all point to major inequalities in the social conditions that shape the well-being of Aboriginal people.

Identification of the Issues

  1. Research Relationships: The Royal Commission on Aboriginal People identified past practices in Aboriginal health research as inconsistent with the production of valid and useful knowledge about the nature and resolution of health problems in Aboriginal communities. While Aboriginal communities have often been the objects of scientific investigation, Aboriginal people feel that this activity has contributed very little to improvements in the health of their communities. As a result, Aboriginal communities are increasingly unwilling to participate in research initiatives that derive from mainstream scientific agendas.

    As an alternative, researchers and communities have begun to develop a health research agenda that provides for the full articulation of Aboriginal interests in the research process. This “partnership” process includes the full range of research activities including the definition of what constitutes a research problem, the management of the data collection, the process of interpreting results, and the dissemination of research results in scientific, policy, and community-based environments. This development has important implications in many related areas discussed below.
  2. Epistemological Considerations: Mainstream academic interest in Aboriginal health research is grounded in the paradigm of Western science, with its cultural origins in the rationalist developments of the European Enlightenment. While this paradigm has had a productive history, it is not always consistent with Aboriginal cultural ideas about health and its causality. Understanding the “determinants of health” from diverse Aboriginal epistemological perspectives can lead a researcher to ask very different questions and employ different methods than might otherwise be the case. Developing a health research agenda that accords equal respect to all paradigms is a challenging task.
  3. Disciplinarity: Consistent with the epistemological consideration is recognition that Aboriginal health research benefits distinctly from multi- or inter- disciplinary approaches. Not only does Aboriginal health research require collaboration across the basic, clinical, social, and applied policy sciences, but collaboration across disciplines within these fields is critical. For example, to better understand what works to prevent further increases in the prevalence of diabetes in Aboriginal communities, research expertise from fields as diverse as psychoneuroimmunology, genetics, epidemiology, nutrition, anthropology, political science, and Aboriginal cultural studies is required.
  4. Methodological Considerations: Consideration of methodological issues ranges from requirements that the research process be “participatory” and “policy-oriented” to more fundamental considerations of scientific method. For example, sampling theory in Western science assumes “communities” are aggregates of individuals; sampling in an Aboriginal community requires consideration of kinship, culture history, and politics. Interpreting research results from an Aboriginal perspective may require innovative merging of qualitative and quantitative methodologies.
  5. Capacity and Infrastructural Development: Developing a research agenda that reflects a true partnership between academic research and the Aboriginal community requires a significant investment in both the human and institutional capacity of the Aboriginal community to conduct health research. This investment must include both the development of an Aboriginal academic research community, as well as institutional research structures with accountability to the Aboriginal governments.
  6. Existing Research Resources: Aboriginal health research in Canada has relied largely on either individuals or small groups of researchers developing partnerships with Aboriginal communities, and functioning largely in isolation from one another. Rarely has there been any substantial institutional investment in these resources, and collaboration across research groups is rare. This situation is unlike either the United States or Australia where a similar research focus has resulted in a significant institutional investment in a network of research centres and institutes. However, despite few resources and little institutional support, the Aboriginal health research community in Canada has achieved remarkable distinction and is considered the international leader in this field.
  7. Dissemination Activities: For health research to be relevant to the policy needs of Aboriginal communities and governments, dissemination activities must target these audiences in unique ways. Researchers have a responsibility to ensure that research results are validated by both scientific and community review. Integration of research results into policy considerations requires ongoing and long-term relationships between the researcher and policy makers.
  8. Ethical Considerations: Aboriginal communities have invested significant effort in the development of ethical protocols that reflect their concern that health research be of direct benefit to their communities. These protocols require a high level of researcher accountability to Aboriginal organizations and communities, and often stipulate community ownership of research results.

Recent Developments

In the last several years, national Aboriginal organizations have undertaken the development of an Aboriginal Health Infostructure (e.g. Canadian Health Infoway). Central to this Infostructure is the development of the Aboriginal Health Institute (AHI), with funding from Health Canada. This Institute will support the health information and policy needs of Aboriginal governments and organizations, and will be fully accountable to Aboriginal authorities. Equally significant is the implementation of the First Nations Health Information System (FNHIS) that will provide First Nations governments with a data system describing community health issues. Discussions are also underway with Statistics Canada, Laboratory Centres for Disease Control, Canadian Institutes for Health Information, and other federal departments, to develop other partnerships and initiatives designed to complement the AHI in elaborating the health infostructure needed to address health issues in the Aboriginal community.