Following the Path: Indigenous Approaches to Patient-Engaged Research Cassandra J. Opikokew Wajuntah Indigenous Research & Engagement Expertise Platform Lead, SCPOR

Getting to Know You, Getting to Know Me Settler/Canoe Lake Cree Nation Standing Buffalo Dakota Nation Mother, daughter, wife, sister, granddaughter of residential school survivor INCA, BAJ, MPA, PhD (Public Policy) Associate Director at IPHRC Platform Lead IREE @ SCPOR The Indian Solution to the Policy Problem: Developing an Indigenous Policymaking Model to Address First Nations Health and Education Disparities

Fostering a culturally safe, respectful environment in the spirit of reconciliation Cultural safety moves beyond the concept of cultural sensitivity to analyzing power imbalances, institutional discrimination, colonization and relationships (NAHO 2006) Cultural Safety education focuses on: teaching students about colonial history and its impact on Indigenous peoples, rather than on increasing knowledge about Indigenous customs and beliefs self-discovery: “Students need to learn to evaluate what they are bringing to the table in terms of their own invisible baggage; that is, attitudes, metaphors, beliefs and values” (Ramsden 1992: 23) Watch, listen and learn. Take what you want, leave the rest

Canada’s Dark Research History Historically, research was done ON Indigenous peoples not WITH or BY Indigenous people (forced subjects) = mistrust Data and information extracted from communities Medical experimentation (ex. nutritional and medical research conducted on residential school children) Result? This is now a period of building trust and relationships with self-determining Indigenous communities that we all have a role in

What Do We Mean by Indigenous Research? We must no longer be only subjects – we want to drive it! Research involving Indigenous people and/or communities Research led by Indigenous researchers Research led by Indigenous communities Research led by researchers using an Indigenous research methodology Research that privileges Indigenous knowledge and “ways of knowing”

A Note on “Patient” Not the preferred term amongst the Indigenous population – why? Implies “downstream” interventions Indigenous preferred focus is on upstream prevention Can be perceived as non-empowering Community member is often the preferable term You choose what term works for you – that’s the key

Indigenous Research vs. POR Indigenous Community-Based Participatory Research Patient-Oriented Research POR + Privileging Indigenous knowledge and ways of knowing Indigenous voices are meaningful Respect and adherence to research frameworks/policies (ex. OCAP, Tri-Council – Chapter 9, UNDRIP) Community involvement/ ownership of data and analysis vs. only individual Ceremony and cultural grounding Trust-building Strengths-based approach Identifying and prioritising Research design, including research question Development of the grant proposal Preparation for execution of the study Data collection Analysing and interpreting data Dissemination Implementation Monitoring and evaluation

Following the Path… Indigenous researchers and ally-researchers have been doing this for years – let’s listen and learn IPHRC’s Acting Out! Research Community-driven Youth-led Strengths-based approach Capacity-building Knowledge translation Improved “patient outcomes”

What is SCPOR’s Role in Indigenous Engagement? SCPOR’s commitment to Indigenous engagement: Must reflect an understanding and prioritization of the unique nation-to-nation relationship between government and Indigenous peoples Recognizes that Indigenous communities and patients contend with the ill and far reaching effects of colonialism, particularly the impacts to Indigenous health

What is SCPOR’s Role in Indigenous Engagement? Builds on and acknowledges the resiliency and self-determination of Indigenous peoples and our inherent rights Acknowledges that there have are specific calls to action, policy guidelines and legislation put in place to guide this unique relationship between governments, health systems, etc. and Indigenous peoples (ex. UNDRIP, TRC Calls to Action, RCAP, PM mandate letters)

How Can/Will We Do This? You’re the experts – tell us! Indigenous Research & Engagement Expertise Platform Builds reciprocal relationships; creates meaningful space for Indigenous voices; and supports SCPOR’s commitment to respectful collaboration with Indigenous communities, crosscutting all SCPOR platforms Indigenous Advisory Circle – comprised of 12-14 community representatives Building and fostering respectful research partnerships SCPOR Oversight Indigenous PFA representative

Questions. Comments. Feedback Questions? Comments? Feedback? Personal beef or a deep, dark secret you need to share? Contact us: Indigenous Engagement Platform Lead: Cassandra.Wajuntah@uregina.ca or (306) 537-2043 Indigenous Engagement Specialist (Saskatoon): Kirstin.Scansen-Isbister@usask.ca or (306) 966-1676 Indigenous Engagement Specialist (Regina): Shane.Keepness@uregina.ca or (306) 585-4876