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Manitoba First Nations Self-Determination in Research

NOVEMBER 22, 2O18

VANESSA TAIT, MDP, HIRGC MEMBER, POLICY ANALYST/RESEARCHER

Guidance from Our Knowledge Keepers

“As Indigenous People we have always done research, always searched for understanding, ways of being and knowing the world around us in order to survive. We just didn’t call it ‘research”

(Chief Norman Bone, Keeseekoowenin First Nation)

“Research is a relationship based on respect, and it takes time to build trust”

(MFNs Elders Workshop – Health Research Ethics – 2004)

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Inherent Right to Self Determination

• “The Creator placed us here and gave us our laws and languages to govern ourselves justly” (Mawedopenais, Treaty #3, 1873)

• First Nations have inherent rights which are entrenched in the Constitution of Canada (1982):

• s.35 “The existing treaty and aboriginal rights of the Aboriginal peoples of Canada are hereby recognized and affirmed.” s.37, 25, 15, etc.

• Only Nations make Treaties. In Manitoba, we have Treaties #1-6, 10 as well as pre-Confederation treaties amongst our own Indigenous Nations including the Dakota.

• This means First Nations are First Nations with constitutionally entrenched rights - NOT a “vulnerable”, “at risk”, “special population”!

• UN Declaration on the Rights of Indigenous people: Annex, Articles 3 & 4

Unable to tell our own First Nation realities and stories if we remain hidden in data…

• There are limitations and gaps found in any dataset that hides our realities.

• Allows the researchers to continue measure our state of based on western standards of wellbeing

• Unique histories, realities and jurisdictional challenges that each Nation faces due to colonial policies and systems that are upheld and used to assimilate First Nations, Metis and Inuit people into Canadian society.

• The data that exists measures the assimilation of the Indigenous Nations into the larger Canadian society

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How do we tell our own stories thru data….

• First Nations Research Centres to accurately identity First Nations with datasets

• Develop surveys that are meaningful and relevant to our communities

• Develop regional and Nation based indicators of wellbeing that reflect the strengths andvalues of the Nations.

• Repatriate existing datasets to apply our own First Nations worldview to accurately tell ourown stories to address health equity

• Create surveillance initiatives to support First Nation understandings of wellness

Western ethics - Tri council policy statementCanadian Institutes of Health Research (CIHR), the Natural Sciences and Engineering Research Council (NSERC), and the Social Sciences and Humanities Research Council (SSHRC)

Both granting agencies and institutions like universities must abide by the Tri Council Policy Statement that outlines research protocols – Chapter 9 Research Involving the First Nations, Inuit and Métis Peoples of Canada

Preamble: “This chapter is designed to serve as a framework for the ethical conduct of research involving Aboriginal peoples. It is offered in a spirit of respect. It is not intended to override or replace ethical guidance offered by Aboriginal peoples themselves.”

http://www.ethics.gc.ca/eng/policy-politique/initiatives/tcps2-eptc2/chapter9-chapitre9/

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Liability vs Responsibility

• Consent form

• Research Ethics Boards

• Research agreements

• Data sharing agreements

Manitoba First Nations Governance over RHS & Research

1996 – Health Information Research Governance Committee (HIRGC) mandated by Chiefs in Assembly as the First Nations research ethics board to:

• Oversee Regional Health Survey (RHS 1997-98, 2002-03, 2008-10, 2016-17)

• Review research proposals

2007 – Chiefs in Assembly amended the Assembly of Manitoba Chiefs (AMC) constitution to support research for self-determination. Research must be done with First Nations and follow:

• Free Prior Informed Consent (on a collective and individual basis);

• First Nations OCAP Principles and;

• First Nations Ethical standards.

• First Nations Benefits

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Self Determination in Research: Regional Longitudinal Health Survey (RHS)

•On-reserve FNs were left out of 3 major surveys

•RHS created by First Nations for First Nations health and wellbeing

•Collects information on the health and living conditions of First Nations communities in 10 regions

•1997-98, 2002-03, 2008-10 & 2016-17

•Reviewed by Harvard University as “unique in the world” to include cultural perspectives and OCAP principles

Free, prior and informed consent

•Consent (agreement) to participate in research requires both community and individual consent

•Consent must be:

◦ free (voluntary – no pressure);

◦ prior (before any info collected), and

◦ informed (FN and person needs to know what research purpose, methods, use would be ahead of participation).

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First Nations Principles of OCAPO- OWNERSHIP

C- CONTROL

A- ACCESS

P- POSSESSION

Originally coined in 1998 as “OCA”

OCAP is fundamentally tied to:

self-determination

self-governance – First Nations governments, like other governments, need data on their people

the preservation and development of First Nations cultures.

OCAP allows a community to make decisions regarding why, how and by whom information is collected, used and shared for research, evaluation and planning purposes.

First Nations Ethical Standards

• 63 First Nations in Manitoba and are peoples of several indigenous nations – Cree, Dakota, Dene, Ojibway, and Oji-Cree.

• We each have our own views and ideas within our own languages.

• Our stories, values and way of life are unique to who we are and our connection to our lands and waters.

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Health Information Research Governance Committee (HIRGC)

HIRGC Members:

◦ Doris Young, Opaskwayak Cree Nation◦ Rene Linklater, O-Pipon-Na-Piwin Cree Nation◦ Gloria Rach, Dakota Ojibway Tribal Council◦ Sarah Samuel, Northlands Denesuline First Nation◦ Elvin Flett, St. Theresa Point◦ Guy Gosselin, Roseau River First Nation◦ Patricia Dorion, Swampy Cree Tribal Council◦ Vanessa Tait, MDP, Academic

Role of HIRGC• Reviews research applications and RHS data access requests that involve MFNs at a regional

level

• The committee does not grant approvals that involve specific individual First Nations or Tribal Councils.

• HIRGC would recommend presenting research project to individual communities within the Tribal Council to seek partnership and a letter of support for the research.

The Process:

1. Research Application that identifies MFNs at a regional level (ie. Diabetes, Smoking, or TB rates amongst First Nations living in Manitoba)

2. Research Application that seeks to access Regional Health Survey (RHS) data at a regional level

Not Approved Process

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HIRGC Research Protocols1. Contact and engage Community/FN partner prior to/or at the idea or draft stage of research

proposal

2. Draft proposal, involve partners in design, include feedback

3. Finalize proposal

4. Submit proposal to HIRGC/Community/Tribal Council obtain letter of support

5. University Research Ethics Board

6. Maintain communication/consultation/ engagement through entire research process

No Research Application is approved by University of Manitoba Research Ethics Board without a letter of support from HIRGC.

Publications and Authorship

• First Nations have right to participate in writing and publications/distribution plans as well as in research project

• First Nations will either be co-authors or acknowledged, depending on participation in writing

• In all cases, First Nations will have right to review BEFORE publication, and right to request edits.

• If consensus cannot be reached, First Nation has right to publish dissent.

• First Nations may also take it upon themselves to speak with publisher.

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Key questions applications are reviewed upon…

• What is the purpose of the research and what are the benefits to MFNs and others?

• Have you involved First Nation(s)? When and How?

• Have you entered into a research agreement or data sharing agreement?

• How will OCAP be abided by?

• How is Free, Prior and Informed Consent abided by?

• Are there First Nations on research team or project staff?

• Are there First Nations on the steering or advisory committee?

FNHSSM Research Unit Guiding Principles & Values – Manitoba Region

• Guided by Knowledge Keepers, ceremony, teachings

• Research to meet First Nations identified needs

• Promote First Nations Ethics (FPIC, OCAP, & FN Ethical Principles)

• Strength based research

• Indigenous research methods

• Build relations/orient universities and researchers

• Mentor and support First Nations/Indigenous researchers and scholars

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FNHSSM Research Staff

• Leona Star, Director of Research

• Wanda Phillips Beck, iPHIT Nurse Manager

• Stephanie Sinclair, iPHIT Researcher/Indigenous Doula Research Coordinator

• Venkata Ramayanam, Statistical Analyst

• Carla Cochrane, FNLED Regional Coordinator

• Wendy McNab, PEKE Coordinator

• Leanne Gillis, Community Liaison/Administrative Assistant

• Donna Toulouse, Research Administrative Assistant

Current: Research Projects that are led by FNHSSM Research Unit

• PEKE – CIHR

• Primary Health Care (IPHIT) - CIHR

• DEVOTION – Lawson Foundation

• Regional Health Survey - FNIGC

• First Nations Labour & Employment Survey - FNIGC

• Indigenous Doula Initiative - CIHR

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Existing Partnerships

• MFN research partnerships • Knowledge Keepers – Council of Elders & Grandmothers Council• CIHR Pathways• University of Winnipeg• University of Manitoba – MFN CAHR and FNMI Section & REBs, Nursing, UM HREB• MHHLS & HIP-C• University of Toronto• Brandon University• MCHP• University of Victoria

POSSESSION of data: Creating our own First Nations Research Data Centre/Server• Established at Assembly of Manitoba Chiefs (AMC) in

2010 based on the First Nation Information Governance Centre (FNIGC) approved data centre modeled after the Stats Can Research Centres

• Access is restricted to a locked down computer with no access to the internet or printers and disabled USB ports

• Currently holds datasets from RHS, REEES, other FN led projects

• Anyone who is in contact with the datasets must sign a confidentiality agreement

• Research Server is now housed at FNHSSM

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Data ACCESS protocols & procedures for the RHS data access

• Once approved by HIRGC, researcher signs a Confidentiality Agreement

• Onsite at FNHSSM under supervision of MFN RHS team

• Restricted computer (no access to internet, disk drives disabled, no access to printer)

• Research Team will upload RHS variables specified in research application and extract analyzed data from restricted computer

Defining who and how MFN RHS Data is ACCESSEDParticipating Community

• Signed BCR and identified data steward within community

External Researcher

• Access is restricted to those research applications reviewed and approved by HIRGC

• Researcher works on-sight at FNHSSM

Tribal Council

• Signed data sharing agreement with participating RHS communities

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Future of MFN Research Server1. FNHSSM Research team will continue to:

• Work with HIRGC

• Build the infrastructure of Research Server

• Support communities to build their own ethics protocols and governance over their own data and research

2. Develop a list of priority research areas based on the needs of MFNs

• Enigok & Ki nisitatowin na

3. MFNs and researchers will have the option to store their own research data on the MFN Research Server (Possession)

Using Research to tell our Own Stories of Strength & Wellness1. Manitoba First Nations Indicators of Wellbeing: Research team testing indicators that were

developed by MFNs based on positive and strengths of communities with the regional

component of the First Nations Regional Early Childhood, Education & Employment Survey.

2. Cultural Continuity: Dr. Micheal Chandler (University of British Columbia) & Dr. Chris

Lalonde (University of Victoria) and research team are working with 5 Nations within

Manitoba to identify protective factors to prevent suicide and chronic disease in MFNs.

3. Indigenous History of TB in MFNs, 1930s-1970s: – Dr. Mary Jane McCallum, (University of

Winnipeg) under the guidance of MFN advisory committee, working on documenting the

story of TB survivors and their families.

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Additional Manitoba First Nations Research Projects 4. Partners for Engagement & Knowledge Exchange (PEKE): Sharing wise practices in the areas

of SDOH, TB, Oral Health, Suicide Prevention, and Diabetes amongst national and

international networks; putting knowledge into action.

5. Indigenous Doula Initiative: Partnership with Manitoba Indigenous Doulas Initiative (MIDI)

and Dr. Jaime Cidro, University of Winnipeg. A culturally based health intervention where

expectant others in a few FN communities will be paired with a local Indigenous doula (birth

helpers) who has undergone culturally specific doula training with an Indigenous Midwife.

Using Data to tell our own story thru Data LinkagesLinkage of Indian Status Registry with Manitoba Personal Health Identification Numbers for the following purposes:

• Chiefs Gathering as members of FNHSSM held at Long Plain, Sept. 19-20, 2017 passed resolution of support for moving forward with Key Linked File under FNHSSM and HIRGC oversight.

• Information Sharing Agreements signed with Manitoba Health in the fall of 2017 and will be signing a ISA with MCHP (U of M) and Manitoba Health

• First Nations Community Health Profiles (all MFNs will receive community profile of their Nation by end of 2018)

• 4 Provincial Deliverables (First Nations Atlas, Diabetes, TB, Children’s Atlas) in partnership with Manitoba Centre for Health Policy (MCHP)

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Leading our own conferences and forums to Tell our Own Stories ENIGOK Respectful Research Relationships – held at U of W February 7-8, 2012

• Indigenous Peoples Self-Determination in Health Research, Ethics and Ethics Review, Indigenous Research Methodologies, How to Make Effective Research Partnerships, RHS 2008-2010 and First Nations Principles of OCAP

First Nations Storytelling Thru Data Workshop Series- held at Saskatoon, SK in partnership with FSIN & AFNIGC Feb 17-19 2015

• bring First Nations together to share and learn through success stories that illustrate how First Nations are collecting, utilizing data, and reclaiming datasets for their own benefits.

Other Research Projects and Conferences Applications:

• iHELTI – LOI “Indigenous Birth Rites as an Intervention”, (MIDI, NACM, NCN, PCN)submitted to CIHR Feb 6th, notifications set out end of March 2018

• Applying to Networks of Centres of Excellence (NCE) launches the Knowledge Mobilization (NCE-KM) Initiative competition –Deadline: Letters of Intent (LOI) are due to NCE April 16, 2018

• Applying to become a CIHR Eligible Institution to receive direct funding

Events:

• Summer Institute on Indigenous Ethics and Research – PEKE & U of W (May 1-4)

• Nibi Gathering, Bannock Point, Whiteshell MB (May 24-27)

• Co hosting the CIHR Annual Pathways Gathering, Lethbridge, AB – PEKE & AFNIGC (June 25-27)

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Goals as Research Unit…

• Fully established and branded First Nations Research Centre within FNHSSM

• Several DSAs in place for repatriated First Nations data

• First Nations accredited training program for data centre & ethics (training for data collectors, community Health Directors, graduates)

• First Nations controlled health data surveillance

• Research Centre core funding and business model in place and operational

• Own Manitoba First Nations Knowledge to Action Journal

Ekosi ! Miigwech ! Mahsi ! Wopida !

For more information on research please contact:

Leona Star, Director of Research, lstar@fnhssm.com

My contact information:

Vanessa Tait, HIRGC Member, Policy Analyst/Researcher FNHSSM

vtait@fnhssm.com