Community engagement among Inuit in Nunavut, Canada: Lessons from the field

Gonzalo G. Alvarez MD, MPH, FRCPCAssociate Professor, University of Ottawa, School of Public Health

Scientist, Ottawa Hospital Research Institute

Head of Pulmonology, Department of Medicine,

The Ottawa Hospital

Disclosures

• No disclosures relating to this topic or presentation

Objectives

• Describe and apply lessons learned from community engagement activities used in the TAIMA TB studies

• Describe how partnerships with community leaders and community engagement are key

60,000 Canadian Inuit

Youngest population in Canada, 56% are under the age of 25

Inuktituk is the strongest indigenous language in Canada 7/10 Inuit can carry a conversation

1950s active TB cases were picked up by the survey ship CD Howe summer tour of Baffin Island

INUIT TB HISTORY

Grzybowski S et al Tubercle 1976

Incidence rates of TB disease by origin, 2006-2016

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Canadian born non-Indigenous

With permission from the Public Health Agency of Canada

Taima TB program of research

CollaborationEducationInnovationEvaluation

Taima means STOP in Inuktitut

Mission: Taima TB is a group of research projects aimed at

helping Inuit in Canada stop the transmission of tuberculosis

(TB) in their communities.

Core Principles: The work of Taima TB is based on the

following principles:

Google:Taima TB

LESSONS LEARNED – FIELD NOTES

#1 what does community engagement mean?

• From the Taima TB perspective

• Communities must be offered involvement in all parts of a research study or program evaluation

• Not just a rubber stamp

• From the planning, to the execution of the project, to the analysis, to the return of information

Community engagement = success

• Understand that geography, history and culture are at the very core of the problems faced with TB in many indigenous communities

• Spend the time LISTENING

• TAKES TIME – I spent the first 5 years listening…2 years preparing and only the last 5 years doing studies that were driven by Inuit

Pangnirtung Health Committee

Lessons Learned

• “It is better if health messages come from Inuit rather than health care professionals”

• “It is easier for Inuit to relate to other Inuit”

• Oral versus written communication

• Street Inuktitut versus school Inuktitut

Iqaluit Taima TB participants

EVALUATION

OPEN ACCESS

PEER REVIEW

KnowledgeTranslation

Study results given back to community

Other modalities used to bring results back included radio, paper and presentations

#2 -Who comes up with the questions that need to be answered?

• Traditional paradigm that the researcher asks the question does not apply

• Home grown ideas are in fact sustainable ideas

• May not be what you signed up for

#3 -Who speaks for the community?

Who decides on what is done and is not done?

• Thorny and often sensitive issue

• Historical wrongs and mistrust

• Layers of players, health versus elected officials

• Different perspectives

• Important to involve as many representatives as possible

TAIMA TB Partners working together

Steering Committee• Established in 2011

• Meet every 2 months, 2 x / year face to face

• 11 members from the Government of Nunavut, Nunavut Tunngavik (NTI) and the Ottawa Hospital Research Institute

• Inuit representation (NTI), policy/decision makers within Nunavut government and health care providers from territorial, regional, and local levels

• Members participate directly in decision making in the overall guidance of the studies

Taima TB Community Engagement

Alvarez et al 2016 PlosONE

Nunavut Tunngavik (NTI) ensures that the promises made under the Nunavutland claims agreement are carried out.

Sharon Edmunds Potvin

Inuit Tapiriit Kanatami (ITK) (Inuit are united in Canada) is the national voice of Inuit living across the Inuit Nunangat. ITK does not deliver or fund programs rather it is a national advocacy organization

NakummekQujannamiikThank you