Successful Partnership between Health Researchers and First Nations Communities

1. Successful Partnership between Health Researchers and First Nations Communities Laurie Hing Man Chan, Ph.D. Professor and Canada Research Chair in Toxicology and Environmental Health University of Ottawa

3. Historical Baggage and Research Fatigue

4. First Nations Food, Nutrition and Environment Study Funding for this study is provided by Health Canada.The information and opinions expressed in this presentation are those of the authors/researchers and do not necessarily reflect the official views of Health Canada. 1

5. First Nations Food, Nutrition and Environment StudyResolution no. 30 at the AFN Annual General AssemblyJuly 12, 2007Halifax, NS 10

6. This study is led by Dr. Laurie Chan, Toxicologist and Professor, University of Northern BC Dr. Olivier Receveur, Nutritionist and Professor, Université de Montréal Dr. Donald Sharp, Assembly of First Nations With contributions from: Dr. Constantine Tikhonov, Dr. Harold Schwartz, and Dr. Caroline Mimeault. 11

7. Objectives In partnership with First Nation communities, the study will aim to: Document traditional and market food consumption Document food security and some water quality issues in communities Estimate exposure to contaminants and intake of nutrients of concern across communities Document self-reported health status and lifestyle habits across communities 12

8. First Nations First Nations Food, Nutrition and Environment Study 100 communities from 2008-2018 ~8 - 12 communities per year and returning back in the last 2 years Systematic Random Sampling by region and ecozone 14

9. Partnership and Community Participation The project involves the participating communities at all stages of the project CIHR guidelines are followed which respect the OCAP principles Data is kept confidential Both community and individual consent 13

10. Approach Methodology workshop Community visits and negotiation of Research Agreement Hiring of research assistants in communities Collecting seasonal food samples Training of research assistants Interviews, hair and drinking water collection Data and sample analysis Result reporting and communications Return data and training 22

12. Research Agreement (1) • Scope of the study • Methods and Procedures • Responsibilities of Lead Researchers • Responsibilities of the First Nation • Non-commercial Purpose • First Nation Involvement and Training • Informed Consent

13. Research Agreement (2) • Confidentiality • Expected outcomes, Benefits and Risks • Data Management and Ownership • Health Canada’s Role in the Research • Dissemination of Results • Term and Termination

14. Data Management (1) • The Data collected is confidential and no name is attached to a record. • Copies will be kept at the offices of the PIs in electronic form. • Each First Nation will have a copy of its own Data. • AFN will be the Data custodian. • The PIs will be available assist First Nation members should First Nation members decide to use the Data for different purpose beyond the objectives of this particular project.

15. Data Management (2) • All Data shall vest in and remain the property of the First Nation, or individual member thereof who provided it. • The Lead Researcher will be able to use the Data for purposes set out in this Agreement. • The First Nation understands that the Lead Researcher’s participation in the Study is conducted under a broader scope of scientific research and the Lead Researcher intends to present the research findings by a variety of means including conference presentations, teaching, publishing in academic journals, and reports to the funding agency, Health Canada.

16. Dissemination of Results (1) • Any future publication or dissemination of research results, beyond what is described in this agreement shall not be undertaken without an agreement between the Lead Researcher and consultation/accommodation with the First Nation community. • The First Nation Community will be the first to receive community research results and the first invited to provide input and feedback on the results. • Community results should be presented in a format and language appropriate and accessible to the First Nation community.

17. Dissemination of Results (2) • Results will not be released without prior presentation and consultation with the First Nation Community. • The Lead Researcher agrees to participate in community meetings to discuss the results and their implications. • The Lead Researcher shall release the findings of the study to the public at large in a joint research report, scientific journal or other publication. Participating First Nations will be acknowledged.

18. Dissemination of Results (3) • Any future publication or dissemination of research results, beyond what is described in this agreement shall not be undertaken without an agreement between the Lead Researcher and consultation/accommodation with the First Nation community.

19. Participation demands capacity • Risk of selection bias • Need to build in capacity building components

20. Contact Information WEB Site: www.fnfnes.ca Phone: (250)-960-6708 Email: FNFNES@unbc.ca