Project Summaries

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Miyo-Mahcihowin: A report on Indigenous Health in Saskatchewan

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Indigenous health in Saskatchewan is in a critical state that requires immediate and focused attention. This report validates the findings of studies such as the First Nations Regional Longitudinal Health Survey (2002/3), the Statistical Profile on the Health of First Nations in Canada (2003), and the Saskatchewan Health Research Strategy (2004) which reflect poor conditions of Indigenous health in Canada and Saskatchewan. It is hoped that this report will serve to bring those issues to the forefront of the local health agenda.

Indigenous community members, health workers, academics, and researchers are at the frontlines of health in communities and are, therefore, the experts of current conditions. There is an urgent request to move from rhetoric to action, to find ways to address the issues and implement strategies that have positive, tangible outcomes for communities. The experts who were surveyed were clear that Indigenous and mainstream health research institutes, the academy, and, most importantly, the funders, need to listen and be willing to shift policies and programs to better reflect the needs and wishes of Indigenous peoples.

The recommendations arising from the consultation fall under several categories:

  • Indigenous Health Research Capacity building;
  • Improving access to and quality of healthcare;
  • Enhancing resources in the mental and social health areas;
  • Monitoring the development and dissemination of traditional knowledge to ensure protection and adherence to OCAP principles;
  • Ensuring funding sustainability and revising Indigenous health research funding strategies and priorities;
  • Increasing Indigenous-specific epidemiological studies to deal with increasing incidence of chronic disease;
  • Enhancing research in areas related to increasing economic development and it’s relationship to health;
  • Evolving strategies for health research communication to ensure the streamlining of research efforts and to disseminate research “best practices” theory and processes.

We are at a point where policy and program decisions could have a significant impact on the health of future generations in the province. Indigenous people are not satisfied with the status quo of health and are not satisfied with health outcomes that reflect systemic problems in policy, funding, and program design and delivery. This document contains recommendations that can serve as starting points for dialogue.

ACADRE Ethics Project-
Kwayask itôtamowin:
Indigenous Research Ethics

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In the spring of 2004, the Institute of Aboriginal Peoples’ Health (IAPH) called for input from the Aboriginal Capacity and Developmental Research Environment (ACADRE) centres in the form of literature reviews and projects that might glean information about ethics from Aboriginal communities. The Indigenous Peoples' Health Research Centre (IPHRC) in Saskatchewan responded to the call and undertook to explore the issue of Aboriginal health research ethics through a three-fold project; a literature review, a legal issues review, and a series of dialogues with the Elders in Saskatchewan.

The literature review summary highlights the findings and recommendations from the recently released The Ethics of Research with Indigenous Peoples authored by IPHRC. The legal review is intended to explore potential and emerging legal issues that arise as a result of the assertion of Indigenous ethics and culturally relevant and ethical research practices and procedures at the national, regional, academic, and local community levels. We engaged in this project in order to ensure that the voice of our communities informs the revision process and, ultimately, to ensure that Aboriginal health research, as it unfolds in the future, does not perpetuate harm, suspicion, and further mistrust for our communities. Rather, we seek to support the development of paradigms that intrinsically protects the Indigenous knowledge and the aspirations of our communities. The Elders’ dialogues summaries presented in narrative form are intended to represent the voice of the Elders in Saskatchewan on issues pertaining to community focused research and the ethics thereof.

From the perspective of our understanding of ethics, based upon the literature review, an exploration of liability issues, combined with the findings of the series of dialogues with Elders and traditional knowledge keepers, we make the following recommendations with respect to the ethics of research with Indigenous peoples:

  • To protect the heritage of a sacred body of knowledge, Indigenous Peoples, and in particular the Elders and knowledge keepers of each community, must be informed and exercise control over all research that relates to heritage within their territories.
  • The Granting Agencies as well as academic and other research institutions should explicitly recognize the rights and privileges of alternate knowledge systems represented by Indigenous Peoples. This recognition should include the support and development of educational, research and training centres that are controlled by indigenous communities, and strengthen these communities’ capacity to document, protect, teach and apply all aspects of their heritage.
  • Governments, research institutions, and Research Ethics Boards should discourage institutional based research regarding any element of Indigenous Peoples heritage without the explicit approval and guidance of Indigenous authorities, Indigenous Elders and knowledge keepers.
  • In the event of a dispute over the custody or use of any element of an Indigenous Peoples’ heritage, judicial and administrative bodies should be guided by the advise of Indigenous Elders who are recognized by the indigenous communities or peoples concerned in having specific knowledge of traditional laws.
  • Researchers must not publish information regarding any information or knowledge obtained from Indigenous peoples or the results of research conducted on flora, fauna, microbes or materials discovered through the assistance of Indigenous Peoples.
  • The jurisdiction of Indigenous Peoples over their culture, heritage, knowledge, and political and intellectual domains must be explicitly recognized in the Tri-Council Policy Statement and in review documents and proposals currently being developed.
  • In recognition of Indigenous jurisdiction, research agreements need to be negotiated and formalized with authorities of various Indigenous jurisdictions before any research is conducted with their people. Concepts of OCAP; ownership, control, access, and possession of all data and information obtained from research involving Indigenous Peoples, must become normative standards. Emerging critical issues include:
    • Negotiations on “benefit sharing” and “benefit sharing agreements” in Genetic research must not take place in advance of genuine Indigenous community consultation and consent.
    • Genetic and biological research must cease until Indigenous authorities have articulated specific direction on these issues from Elders, leaders, and communities.
  • Indigenous community empowerment and benefits must become central features of any research entertained and conducted with respect to Indigenous Peoples. Professional associations of scientists, engineers and scholars, in collaboration with Indigenous Peoples, should sponsor seminars and disseminate publications to promote ethical conduct in conformity with these guidelines and develop processes and structures to discipline members who act in contravention.
  • Understanding Indigenous worldviews, social structures and systems, and the role of education and pedagogical forms in the process of knowledge and cultural transmission, is a vital necessity in coming to terms with research involving Indigenous Peoples. Education and knowledge translation projects in these respects must be supported with appropriate funding and resources.
  • Steps must be taken to immediately implement policy that will ameliorate inherent conflicts between Research Ethics Board policies and Indigenous ethical requirements, the primary example being the barriers to meaningful negotiation of consent and research parameters on the part of community participants prior to the receipt of formal approval from institutional Research Ethics Boards.
  • Further conceptual development of the ethical space will require guideline principles put into effect by the three granting agencies that cement practices of dialogue, negotiation, and research agreements with Indigenous authorities in any research involving Indigenous Peoples.
  • Ongoing efforts by scholars and political groups to formulate the parameters of national copyright laws and the protection of Indigenous Peoples’ intellectual and cultural property rights must take extreme urgency. Protection and recognition of Indigenous peoples’ intellectual and cultural property rights by researchers and institutions must be part and parcel of any funding received from the three granting agencies.


ACADRE Knowledge Translation Project: Knowledge Translation and Indigenous Knowledge Symposium

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This report represents the response of the Indigenous Peoples’ Health Research Centre (IPHRC) to the Canadian Institutes of Health Research – Institute of Aboriginal Peoples’ Health (CIHR-IAPH) call for ACADRE statements on enhancing research efforts in the area of knowledge translation. As noted in the IPHRC proposal, knowledge translation, which is understood to be a key link between academic health sciences research and improved health outcomes, is currently a priority of national health research agencies. The high levels of ill health among Indigenous peoples create a sense of urgency in articulating how knowledge translation links can be enhanced to positively influence health outcomes. Knowledge translation efforts to date have been aligned with mainstream approaches that either do not adapt to Indigenous community contexts or take a ‘pan-Indigenous’ approach then tends to disregard geographic, language, and cultural divides.

The IPHRC initiated a series of dialogues in the spring and summer of 2005 aimed at addressing these shortcomings in mainstream knowledge translation approaches by bringing together health practitioners, health researchers, community members, and Elders to determine what knowledge translation means from an Indigenous standpoint in Saskatchewan.
The stated objectives of the IPHRC knowledge translation initiative were as follows:

  • A. Gather together key academic and community stakeholders in three locations in the province;
  • B. Provide an opportunity for academics, Aboriginal health researchers, and communities to network/forge relationships with each other
  • C. Conduct panel discussions with Indigenous researchers working in the area of KT in each of these locations to facilitate networking, knowledge gathering, and capacity building;
  • D. Conduct discussions/focus groups with key community and academic stakeholders regarding their KT priorities, ideas, and recommendations for further research;
    • E. Contribute to capacity building in the area of KT through hiring one or two research assistant(s) to coordinate and participate in the KT program, and including IPHRC Graduate students in the KT program;
    • F. Produce a report based on the input and recommendations gathered from the community and academic stakeholders;
    • G. Gain a comprehensive picture of the current state of the art with respect to knowledge translation in Saskatchewan, including coverage and gaps, in order to contribute to a national knowledge translation synthesis.

The primary success of the current IPHRC knowledge translation initiative was in further developing the networks between community members and health researchers in Saskatchewan, and in highlighting knowledge translation as an issue of mutual concern and interest.


Isi-Askiwan – The State of the Land: Prince Albert Grand Council Elders Gathering on Climate Change

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The purpose of this report is to highlight the contribution of Elders and other traditional knowledge holders to the discussion of the impacts of climate change. It is argued that First Nations perspectives of the natural world can enhance western scientific research and understanding about the natural forces of climate change. It should be noted that, for the most part, the observations of the PAGC Elders reinforced, confirmed and animated scientific observations on climate change in Saskatchewan. The Elders’ forum was an appropriate and important venue for documenting this knowledge and for developing a better understanding of the relationship between healthy communities and healthy environments. Elders can bring forward the collective wisdom of countless generations living in particular geographic locations, adding considerable depth to society’s view of climate change and human adaptation.

Of all the southern regions in Canada, the Prairie Provinces are likely to experience the greatest increase in temperatures. This will likely result in increased aridity over a larger area in Saskatchewan, and more frequent and severe periods of drought, especially in the southern region. The availability of water will be a significant concern, as run-off from glaciers in the Rocky Mountains declines. In more northern regions, the increase in frequency and intensity of forest fires will likely be a concern. Compared to southern regions, the northern region of Saskatchewan has fewer historical weather monitoring stations that have recorded temperature, rainfall and wind. This information gap can be filled in part by proxy environmental measures, as well as by the oral histories that have been passed on from generation to generation in Indigenous communities. One of the main goals in assembling the PAGC Elders for this Forum was to draw on that source of oral knowledge. In addition, PARC has recognized the importance of researching the social, as well as physical, impacts of climate change in the Prairie Provinces. As observed by the Elders, there is a deep connection between the health of the physical
environment, and the holistic health of individuals, families and communities.

Increasingly, western scientists and academics are recognizing the importance and value of the traditional ecological knowledge (TEK) held by Elders and other members of Indigenous communities. As the issue of climate change has become a growing concern, Indigenous people, and Elders in particular, have begun to add their voices and observations to the body of knowledge about this issue. This has particularly been the case in northern regions where livelihood activities often remain tied to the land. Recent initiatives in this area point to the growing need for collaboration between western scientists and Indigenous communities to understand and address climate change issues. The PAGC Elders’ forum on climate change is one contribution to this process.

The primary objective in hosting this event was to create an open forum based on respectful learning and traditional protocols in which Elders from the PAGC area could share information about climate change with one another and with members of the scientific community. A secondary objective in hosting this forum was to develop a positive working relationship between the PAGC, the Indigenous Peoples Health Research Centre, and the Prairie Adaptation Research Collaborative. In addition, the forum aimed to raise awareness at the community level around issues of climate change.

 


Knowledge Translation Summit: Sharing What We Know About Living a Good Life

Led by Aboriginal people, the summit brought together community Elders, primary health care providers, academic and community-based health researchers, health policy makers and others to explore the concept of KT and address the following objectives:

  • 1. Provide Indigenous peoples from across Canada and invited guests from the United States, New Zealand and Peru with the opportunity to define the concept of knowledge translation in their own terms and contexts.
  • 2. Provide Indigenous and non-Indigenous people in leadership and research roles with an opportunity to discuss the theory, politics and practice of knowledge translation.
  • 3. Discuss practical tools required to engage in knowledge translation activities at the community, regional and national levels.
  • 4. Link the concept of Indigenous knowledge translation to discussions of literacy, culture and health.

Over the course of the four busy days, a set of critical, insightful questions emerged through plenary panel discussions, research project presentations, story telling, music, meals and personal reflections over cups of tea and coffee. These questions built upon, broadened and challenged the summit’s original objectives. Although the following list is not exhaustive and does not capture the dynamic process that evolved as we grappled with the concept of knowledge translation, here are some of the fundamental questions that shaped our debates:

What is Indigenous knowledge?
Where is Indigenous knowledge?
Who are the teachers of Indigenous knowledge?
What is Indigenous knowledge translation?
How does gender shape Indigenous knowledge and knowledge translation?
What is an Indigenous research methodology?
What do we mean when we talk about ethics?
Are we living life in a good way?

In keeping with the stated objectives of the summit, the discussions centered around definitions of knowledge translation; desired outcomes of knowledge translation activities for Indigenous communities; best practice examples of knowledge translation by/for/with Indigenous communities; partnerships and processes for knowledge translation; and future directions for knowledge translation.

Through Elders’ stories, keynote speeches, plenary panels, research presentations, facilitated workshops and a key stakeholder meeting, summit participants touched upon topics ranging from traditional Inuit midwifery practices, to urban community development and healing through a storyteller’s blanket, to health systems management.

Synthesis of the discussions elicited the following set of themes:

  • Diversity and ethical spaces: Recognition of the inherent diversity within and between Indigenous communities; the spectrum of values and practices of the non-Indigenous research partners, institutions, bureaucracies; and the “ethical spaces” where these Indigenous and non-Indigenous diversities meet.
  • Where is Indigenous knowledge? Knowledge is alive, enfolded in nature, relationships, spirituality and everyday experience.
  • Who are our teachers? Family members, community members, and leaders who share what they know about living a good life through their actions, through apprenticeship, through their spiritual guidance and through their stories.
  • What is knowledge translation? Many processes, including: sitting together around the kitchen table; translating/interpreting from western language to community language; involving communities and individuals in shaping research; and putting research into practice.
  • Old lady raised: Women profoundly shaped what people know about health promotion, ethics, traditional medicines, relationships, responsibility.
  • The political context of knowledge translation: Post-colonial knowledge translation is about power, control, constitutional rights.
  • Loss of knowledge: Generational gaps in the chain of knowledge translation pose internal risks; poverty and lack of control of research pose external risks; to counter these risks, it is necessary to bring knowledge out of hiding.
  • Respect, responsibility, survival, endurance: Collective and individual responsibility to share knowledge.
  • Indigenous health research and policy processes: Promotion of best practice Indigenous models of research ethics and methodology.
  • Living a good life: In order to have a good life for yourself, your family, and your community, you cannot do it alone; partnerships are your survival.

In the spirit of action-based research, a smaller group of stakeholders came together on day four to consider options for our “next step.” It was agreed that a sub-committee of stakeholders would work together to draft an Indigenous knowledge translation policy framework.