“Authentic” Research Relationships to
      Improve Aboriginal Health?

                   By: Julie Bull
                ...
• How can research proceed responsibly
  against a backdrop of colonialism and
  inequity?

• What is the role of communit...
The outer ring of the graphic is inspired by the
  traditional native medicine wheel, with the 4 colors
    representing t...
Background
                                     Political backdrop of Canadian
                                       repr...
Background: Issue

• Political Backdrop
   – Assimilation
   – Resistance

• History of research „on‟ aboriginal
  peoples...
Background: Issue

• Canadian Institutes of Health
  Research Guidelines for Research
  Involving Aboriginal Peoples
  (20...
Background: Context

“Community Health Research in
  Labrador: Listening, Learning and
  Working Together”

Labrador
-Nuna...
Labrador Innu, Inuit, and Metis Communities




       NAHO Conference   Our People Our Health   November 2009
Concentric Circles of Belonging




    NAHO Conference   Our People Our Health   November 2009
Method
Participation:
  to have a part of or share in something
Action:
  the bringing about of an alteration
            ...
Results

 Research imposition
        Assimilation, exploitation, exoticism

 “Quite often, when you get involved in
rese...
Results
“[There were] researchers coming through the
  hospital and cutting people‟s hair and blood
 samples and going up ...
Results

   Authentic research
          Consent

“It can‟t be a broad consent that then gives the
person carte blanche t...
Results

Authentic research
 Ownership, control, access

“in the last few years that people
[in Labrador] are recognizing...
Results
    Authentic research
          Research relevance

“we need to make sure that research that‟s
taking place are ...
Results

“[Y]ou would have to apply a philosophy
of equity …not to do things to catch
headlines or to make a story or to m...
Results
                                      “We would like to see
                                    some of the resear...
Results

Local Review Process
  – Guiding principles & values
        •   Community
        •   Cohesiveness
        •   C...
Summary of Results

Research imposition
   – Exploitation and assimilation
Authentic research
   – Consent
   – Ownership,...
Policy Implications

• Canadian Institutes of Health
  Research (CIHR)
   – „downstream‟ approach will only
     work if o...
Recommendations

The provincial board should take this
opportunity to actively engage aboriginal
communities in Newfoundla...
Recommendations

It is recognized that little research has
direct benefit to the research participant
or the community yet...
Recommendations

Communities believe and practice an
interconnectedness of content, agenda,
and ethics: This should be exp...
Conclusion

• Cultural safety and collaboration

• Respect and reciprocity

• Contextualized with the communities



In ot...
Bridging Gaps?




NAHO Conference   Our People Our Health   November 2009
References
Atkins, C. J., Reuffe, L., Roddy, J. E., Platts, M. J., Robinson, H.S., & Ward, R. (1988). Rheumatic disease in...
Tshanaskumitan



                  Nakkumek



                                   Thank You



NAHO Conference    Our Peo...
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“Authentic” Research Relationships to Improve Aboriginal Health?

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By: Julie Bull
B.A (h), MAHSR

University of Prince Edward Island, Atlantic Regional Training Centre
Atlantic Regional Health Research Program
Memorial University

NAHO 2009 National Conference

Published in: Health & Medicine
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“Authentic” Research Relationships to Improve Aboriginal Health?

  1. 1. “Authentic” Research Relationships to Improve Aboriginal Health? By: Julie Bull B.A (h), MAHSR NAHO Conference Our People Our Health November 2009
  2. 2. • How can research proceed responsibly against a backdrop of colonialism and inequity? • What is the role of community involvement in research? • Where does the paradigm of individual informed consent break down and why? • What are the limitations of benefit- sharing as a model for ethical research with communities? NAHO Conference Our People Our Health November 2009
  3. 3. The outer ring of the graphic is inspired by the traditional native medicine wheel, with the 4 colors representing the focus on the spiritual, mental, emotional, and physical health. The eagle, a traditional symbol of protection, is combined with the scales, a symbol representative of justice and ethics, to form a caduceus – a modern representation of Western medicine. Lines drawn from the edge of the outer ring toward the center in the fashion of a dreamcatcher form an inukshuk. The interconnectedness of the design illustrates Labrador Innu, Inuit, and Metis people working together. As a whole the graphic symbolizes the dream of combining traditional and modern medicine, while focusing on the importance of health research ethics NAHO Conference Our People Our Health November 2009
  4. 4. Background Political backdrop of Canadian representation and history of research „on‟ aboriginal peoples + National guidelines & provincial legislation = Explicit tension of research ethics goals NAHO Conference Our People Our Health November 2009
  5. 5. Background: Issue • Political Backdrop – Assimilation – Resistance • History of research „on‟ aboriginal peoples – Assimilation – Resistance NAHO Conference Our People Our Health November 2009
  6. 6. Background: Issue • Canadian Institutes of Health Research Guidelines for Research Involving Aboriginal Peoples (2007) • Provincial Health Research Ethics Authority • Draft 2nd edition of TCPS (2009) NAHO Conference Our People Our Health November 2009
  7. 7. Background: Context “Community Health Research in Labrador: Listening, Learning and Working Together” Labrador -Nunatsiavut Government Department of Health and Social Development -Sheshashui Innu Health Commission -Mushuau Innu Health Commission -Labrador Metis Nation NAHO Conference Our People Our Health November 2009
  8. 8. Labrador Innu, Inuit, and Metis Communities NAHO Conference Our People Our Health November 2009
  9. 9. Concentric Circles of Belonging NAHO Conference Our People Our Health November 2009
  10. 10. Method Participation: to have a part of or share in something Action: the bringing about of an alteration ...using research as a tool Theoretical Assumptions  Reality is situated (Berger & Luckmann, 1966)  Researchers cannot acquire the depth of understanding the „community‟ already has through living (Elden & Chisholm, 1993) NAHO Conference Our People Our Health November 2009
  11. 11. Results Research imposition  Assimilation, exploitation, exoticism “Quite often, when you get involved in research, you‟re influenced by numbers and statistics and exotic backgrounds of people and things like that.” “don‟t they know everything there is to know about us by now?” NAHO Conference Our People Our Health November 2009
  12. 12. Results “[There were] researchers coming through the hospital and cutting people‟s hair and blood samples and going up the coast and doing the same thing, and nobody is really sure what they‟re doing or why they‟re doing it and, you know, hiring guides to take them to [a community] and stuff like that by boat, and they really have no idea of what the purpose of their study was. You know, brought them for a boil-up and all of this stuff. They never did speak about the study. They just… you know, enjoyed the Labrador experience and took what they needed and left.” NAHO Conference Our People Our Health November 2009
  13. 13. Results Authentic research  Consent “It can‟t be a broad consent that then gives the person carte blanche to do whatever they want with that research.” “the consent cannot be so stringent as to inhibit a researcher from writing a journal article” NAHO Conference Our People Our Health November 2009
  14. 14. Results Authentic research  Ownership, control, access “in the last few years that people [in Labrador] are recognizing how much of a benefit that might be to communities … to be involved … and to decide on what kind of research is happening in their community.” NAHO Conference Our People Our Health November 2009
  15. 15. Results Authentic research  Research relevance “we need to make sure that research that‟s taking place are on topics that are going to be beneficial to us and not only to the researcher to get their masters degree.” “[R]esearchers have [this idea] that ...academic freedom means that you don‟t have that obligation to people…the community has a stake in what you‟re doing.” NAHO Conference Our People Our Health November 2009
  16. 16. Results “[Y]ou would have to apply a philosophy of equity …not to do things to catch headlines or to make a story or to make yourself feel good, or to have alarming statistics for certain areas or whatever, but to go in and look for the truth and get a balanced approach and then apply it. Find a way to apply your unbiased research to unbiased results, and I think that would be quite ethical” NAHO Conference Our People Our Health November 2009
  17. 17. Results “We would like to see some of the research get put into use instead of continually conducting research that doesn‟t seem to go further than a technical written report.” NAHO Conference Our People Our Health November 2009
  18. 18. Results Local Review Process – Guiding principles & values • Community • Cohesiveness • Customs • Respect • Reciprocity – Ethical review procedures NAHO Conference Our People Our Health November 2009
  19. 19. Summary of Results Research imposition – Exploitation and assimilation Authentic research – Consent – Ownership, control, access – Research relevence Local processes – Values and procedures NAHO Conference Our People Our Health November 2009
  20. 20. Policy Implications • Canadian Institutes of Health Research (CIHR) – „downstream‟ approach will only work if other stakeholders comply (i.e. REBs, funders) • Provincial Health Research Ethics Authority (PHREA) – Even with centralization, community autonomy and self governance should be respected NAHO Conference Our People Our Health November 2009
  21. 21. Recommendations The provincial board should take this opportunity to actively engage aboriginal communities in Newfoundland and Labrador in the development of its processes and procedures. This is the perfect opportunity to set precedence in the country to ensure that aboriginal review boards have the capacity and power to act, rather than feeling exploited and disengaged. NAHO Conference Our People Our Health November 2009
  22. 22. Recommendations It is recognized that little research has direct benefit to the research participant or the community yet “benefit sharing” is included in the CIHR Guidelines (and many community guidelines). This should be explained to researchers who can then comply by offering training, capacity building, or other indirect benefits of research. NAHO Conference Our People Our Health November 2009
  23. 23. Recommendations Communities believe and practice an interconnectedness of content, agenda, and ethics: This should be explicitly available information because researchers are likely to generally separate these three components and focus primarily on research ethics. NAHO Conference Our People Our Health November 2009
  24. 24. Conclusion • Cultural safety and collaboration • Respect and reciprocity • Contextualized with the communities In other words..... AUTHENTIC RESEARCH NAHO Conference Our People Our Health November 2009
  25. 25. Bridging Gaps? NAHO Conference Our People Our Health November 2009
  26. 26. References Atkins, C. J., Reuffe, L., Roddy, J. E., Platts, M. J., Robinson, H.S., & Ward, R. (1988). Rheumatic disease in the Nuu-Chah-Nulth native Indians of the Pacific Northwest. Journal of Rheumatology, 15, 684-690. Canadian Institutes of Health Research (CIHR). (2005). CIHR Guidelines for Health Research Involving Aboriginal Peoples: Draft for Consultation. Retrieved April 1, 2007, from http://www.cihr- irsc.gc.ca/e/documents/CIHR_ethics_guidelines_V1_e.pdf CBC News (2005). School abuse victims getting $1.9B. Retrieved April 8, 2008, from http://www.cbc.ca/story/canada/national/2005/11/23/residential-package051123.html. Dokis, Terry. Cartoons Ermine, W.J. (2000). The Ethics of Research Involving Indigenous Peoples. University of Saskatchewan. Unpublished Master‟s Thesis. National Aboriginal Health Organization (NAHO). (2000). Governance of Research Involving Human Subjects: Research Brief. Ottawa, Ontario. Poole, R. (1972). Towards Deep Subjectivity. New York, NY: Harper Torch Books. Saskatchewan Indian. (2004). History of Indian Act. Retrieved February 1, 2008, from http://www.sicc.sk.ca/saskindian/a78mar04.htm. Snarch, B. (2004). Ownership, Control, Access, and Possession (OCAP) or Self-Determination Applied to Research, A Critical Analysis of Contemporary First Nations Research and Some Options for First Nations Communities. Journal of Aboriginal Health, 14(16). NAHO Conference Our People Our Health November 2009
  27. 27. Tshanaskumitan Nakkumek Thank You NAHO Conference Our People Our Health November 2009
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