Canadian Institutes of Health Research. Institute of Aboriginal Peoples Health

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ABORIGINAL KNOWLEDGE TRANSLATION: Understanding and respecting the distinct needs of Aboriginal communities in research Canadian Institutes of Health Research Institute of Aboriginal Peoples Health June 2009

Table of Contents 1. What is Aboriginal Knowledge Translation?...Page 3 2. The Ethics of Knowledge Translation..Page 3 3. Knowledge: Understanding the K of KT...Page 3 4. Translation: Understanding the T of KT Page 4 5. KT in Action.Page 4 6. Take Home Messages...Page 5 7. References..Page 5 CIHR is a federal agency reporting to Parliament through the Minister of Health. It was created by an Act of Parliament in June 2000 (48-49 Elizabeth II, C.6) For further information, please contact: Canadian Institutes of Health Research 160 Elgin Street, 9th Floor Ottawa, Ontario K1A 0W90 Telephone: 613.941.2672 Fax: 613.954.1800 Toll Free: 1.888.603.4178 E-mail: info@cihr-irsc.gc.ca Web Site: www.cihr-irsc.gc.ca CIHR-IAPH Web Site: http://www.cihr-irsc.gc.ca/e/8668 ABORIGINAL KNOWLEDGE TRANSLATION: Understanding and respecting the distinct needs of Aboriginal communities in research was commissioned by the CIHR-Institute of Aboriginal Peoples Health. Authors: Elizabeth Estey M.A., Janet Smylie M.D., & Ann Macaulay M.D. 2

1. What is Aboriginal Knowledge Translation? There are many different and complex descriptions of knowledge translation (KT), and no single agreed upon definition. One definition that has been used to describe KT in Aboriginal contexts is: sharing what we know about living a good life. 1 This is quite different from the Canadian Institutes of Health Research (CIHR), which defines KT as: a dynamic and iterative process that includes synthesis, dissemination, exchange and ethically sound application of knowledge to improve the health of Canadians, provide more effective health services and products and strengthen the health care system. 2 As the CIHR further explains: this process takes place within a complex system of interactions between researchers and knowledge users which may vary in intensity, complexity and level of engagement depending on the nature of the research and the findings as well as the needs of the particular knowledge user. 2 In Western science-based contexts, KT has also been described by its purpose: to reduce the know-do gap. Closing the know-do gap is a recent concern for the Western research community, as the worlds of research-based knowledge and action have traditionally been separated. This separation of knowledge and action comes from a different paradigm than Aboriginal knowledge traditions, where knowledge is often inherently practical. Sharing what we know about living a good life speaks to the fact that Aboriginal people have been doing and applying their own science for centuries: rich oral traditions, experiential knowledge, and cross-cultural sharing form the foundations of the KT tradition. This rich history of KT in Aboriginal communities provides a framework for researchers and policy-makers interested in Aboriginal health to learn from and integrate into their work. The combination of a rich history of KT in Aboriginal communities and growing interest in KT among the Western scientific research community provides a unique opportunity to develop partnerships to utilize and apply knowledge to improve Aboriginal health and well-being. These partnerships are particularly important today, as large disparities in health status continue to exist between Aboriginal and non-aboriginal populations. KT approaches that are driven by Aboriginal community members and their knowledge systems will be the most effective in addressing these health status disparities. 3 2. The Ethics of Knowledge Translation Aboriginal KT using research to create positive change is an ethical issue and pursuit. Canada s Aboriginal (First Nation, Inuit, and Métis) Peoples are Canada s First Peoples; as such, they have unique rights and responsibilities. Thus, research involving Aboriginal people requires particular consideration. Ethical guidelines have been articulated by national organizations, including the recent CIHR Guidelines for Health Research involving Aboriginal People 4 and a new version of chapter nine Research Involving Aboriginal Peoples of the Tri-council Policy Statement. 5 The 4 R s of research respect, reciprocity, relevance, and responsibility originally described by Kirkness and Bernhardt 6 are embedded in each of these guidelines and provide a simple framework for understanding and engaging in Aboriginal research ethics. The Ownership, Control, Access, Possession (OCAP) principles also provide guidance about how to conduct ethical health research with First Nations communities. 7 Overall, these documents highlight the importance of including Aboriginal people in research and policy-making. This requires a focus both on the knowledge that is used and gathered and on the process of translation. These areas are discussed in detail below. 3. Knowledge: Understanding the K of KT There are many different types and sources of knowledge that must be respected by the worlds of research and policy. Respect for a multiplicity of perspectives is built into many Aboriginal knowledge traditions. This is contrary to some non-aboriginal settings, where knowledge gained through rigorous research methods, such as randomized controlled trials (RCTs), receives the most attention and credit. Thus, increased recognition and understanding of the strength and time-tested traditions of Aboriginal knowledge systems is essential to creating greater respect for different ways of knowing and building strength and depth into Aboriginal health research and policy-making. 3

Understanding and building on the many sources of knowing is necessary to fill the large gaps in our knowledge about all Aboriginal health status First Nation, non-status First Nation, Inuit, Métis, rural and remote Aboriginal, and urban Aboriginal health. Such knowledge must be carefully evaluated and analyzed. For instance, continuing to apply Western science-based evidence perspectives will only further marginalize Aboriginal ways of knowing and perpetuate Aboriginal/non- Aboriginal inequities. This is particularly the case for Aboriginal health interventions, which are complex both in terms of the intervention and the community context and are not easily evaluated by the standard RCTs. The multiplicity of knowledge sources, therefore, requires a multiplicity of evaluation approaches. 4. Translation: Understanding the T of KT The translation of knowledge into action necessarily requires community input and support at the onset. The involvement of Aboriginal Peoples in all research (from primary data collection at a local level to regional and secondary data collection) and action (from policy-making to program development) is an ethical requirement. Engaging the community in KT also contributes to its effectiveness: it increases relevancy, facilitates community support, increases community knowledge, builds capacity, and encourages sustainability. While the translation of research was originally thought of as something that should be completed at the end of the research project, this is not always appropriate. The CIHR differentiates between end of grant KT and integrated KT. End of grant KT is the typical approach to KT; for example, researchers disseminating their findings through publication in a journal, presentation at an academic conference, and/or trying to persuade policy-makers of the importance of their results. On the other hand, integrated KT uses the same principles as community-based participatory action research. 8;9;10 This approach brings researchers into full partnership with communities and other stakeholders throughout the entire research process (i.e. from the development of the research question to interpretation and dissemination of the results). Providing the option of a participatory research approach as outlined in the CIHR Guidelines for Health Research Involving Aboriginal People 3 is essential to facilitating ethical, relevant, and successful Aboriginal health research and research products. The translation of research results requires time, money, and conscious attention to partnership and dissemination strategies from the beginning of the research project. Research developed in partnership with community can utilize existing channels for dissemination in Aboriginal contexts (i.e. kinship networks, the moccasin telegraph, stories, and talking circles). Despite the effectiveness of these traditional modes of KT, the message being sent and the messenger remain very important. Contextualizing research results and other knowledge products is essential to developing and communicating a clear evidence-based message. As people tend to learn best from their peers, it is most desirable for the message to be developed and communicated by community members, Aboriginal community-based organizations, and/or Aboriginal leaders. Collaborating with communications and media experts can also help enhance the development and transmission of the message. 5. KT in Action As the above sections demonstrate, KT in Aboriginal health requires researchers and policymakers to think about research and evidence-based decision-making in a different way. But, thinking of research as a tool for improving Aboriginal health should not be considered entirely new. Aboriginal people have long understood that the purpose of knowledge generation is to use it to improve the health and well-being of the community. It is well known that policies that address the social determinants of health will improve health status and reduce health inequities. As researchers, therefore, it is important to try to link research findings with policy changes that address the underlying determinants of Aboriginal health. As policy-makers, it is important to integrate this knowledge into existing policies and programs, as well as learn from this knowledge to develop new policies and programs focused on improving the health and well-being of Aboriginal Peoples in Canada. 4

6. Take Home Messages 1. Build on both Aboriginal and non-aboriginal definitions of KT. 2. Understand and engage with the ethics of KT. 3. Draw from the long history of KT in Aboriginal communities and build on traditional practices and understandings of knowledge generation and sharing, as well as health and well-being. 4. Utilize the multiple types of knowledge and ways of knowing. 5. Partner with Aboriginal communities throughout the research and policy-making processes. 6. Tailor research and KT strategies to local Aboriginal knowledge and cultural systems. 7. Engage and involve First Nations, Inuit, and Métis communities, their Elders, and their political leadership in research and policy-making. 8. Work with experts in communications and media engagement to develop and refine your KT message when and where it is appropriate and possible. 7. References 1 Kaplan-Myrth, N. & Smylie, J. (Eds.) (2006). Sharing what we know about living a good life. Regina: Indigenous KT Summit Steering Committee. Retrieved April 12, 2009 from http://www.iphrc.ca/upload/final_summit_report_sept_30.pdf 2 Canadian Institutes of Health Research [CIHR]. (2008). About Knowledge Translation. On the CIHR Knowledge Translation and Commercialization Branch Website. Retrieved April 12, 2009 from http://www.cihr-irsc.gc.ca/e/29418.html 3 Ermine, W.(2006) In Kaplan-Myrth, N. & Smylie, J. (Eds.) Sharing what we know about living a good life. Regina: Indigenous KT Summit Steering Committee. Retrieved April 12, 2009 from http://www.iphrc.ca/upload/final_summit_report_sept_30.pdf 4 CIHR. (2007). CIHR Guidelines for Health Research Involving Aboriginal Peoples. Retrieved April 12, 2009 from http://www.cihr-irsc.gc.ca/e/documents/ethics_aboriginal_guidelines_e.pdf 5 Interagency Panel on Research Ethics. (2008) Chapter 9: Research Involving Aboriginal Peoples. Draft 2nd Edition of the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. Retrieved April 12, 2009 from http://web.uvic.ca/psyc/lalonde/ethics/tcps-revision- Chapter-9-only.pdf. See http://web.uvic.ca/psyc/lalonde/ethics/tcps-revision-all.pdf for the fully revised TCPS statement. 6 Kirkness, V.J. & Barnhardt, R. (1991). First Nations and Higher Education: The Four R's--Respect, Relevance, Reciprocity, Responsibility. Journal of American Indian Education, 30(3): 1-15. 7 Schnarch, B. (2004). Ownership, control, access, and possession (OCAP) or self-determination applied to research. Journal of Aboriginal Health, 1(1), 1-35. Retrieved March 31, 2008, from www.research.utoronto.ca/ethics/pdf/human/nonspecific/ocap%20principles.pdf 8 Kahnawake Schools Diabetes Prevention Project [KSDPP]. (2007). KSDPP Code of Research Ethics. Retrieved April 13, 2009 http://www.ksdpp.org/elder/ksdpp_code_of_research_ethics2007.pdf 9 Macaulay AC, Gibson N., Freeman W, Commanda L, McCabe M, Robbins C, &Twohig P. (1999) Participatory Research Maximizes Community and Lay Involvement. [For the North American Primary Care Research Group]. British Medical Journal, 319: 774-8. 10 Parry, D. Salsberg, J., & Macaulay, A.C. A Guide to Researcher and Knowledge-User Collaboration in Health Research. Retrieved May 18, 2009 from http://www.cihr-irsc.gc.ca/e/39128.html 5