Who we are
We are a team of Inuit-led and Inuit-specific organizations and academic health researchers who are active in health care systems that provide services to communities in the Qikiqtaani region of Nunavut and in Ottawa, Ontario.
We have been working to enhance opportunities for Inuit to participate in decisions about their healthcare, in a research project we call “Not Deciding Alone.” Not Deciding Alone aims to support Inuit self-determination [1] by utilizing a process called “shared decision making”. Shared decision making is when a person experiencing a health issue works together with healthcare providers, to make decisions about their health [2,3]. Shared decision making upholds person- centred care and supports positive health outcomes [4].
How we work together
Our team research partnerships and ways of working together are structured to ensure inclusion of people from Inuit-led and/or Inuit-specific organizations. Our team consists of a Steering Committee who guides the work, and academic researcher members. The role of the academic researcher members is to take action on the guidance from the Steering Committee. Our team uses a collaborative approach to research to share knowledge and work together for a common goal. We meet regularly, usually once a month, to connect, reflect and make decisions on how to move our work forward.
Steering Committee
Malaya is a proud Inuk woman, born and raised in Iqaluit, Nunavut now living in Aylmer, Quebec with her husband Tim.” Malaya is the President of Larga Baffin Ltd. In Ottawa, Ontario. Larga Baffin is a medical boarding home for Inuit who travel from Nunavut for medical purposes. Larga provides a home like atmosphere for Inuit. Providing meals, accommodations, transportation to and from airport and appointments. Malaya is fully bilingual in Inuktitut and English. Malaya has over 20 years experience working with Inuit Organizations and has served on several boards with first-hand experience with Board membership, corporate governance, human resources, and administration. Malaya is an accomplished professional who is a highly skilled bridge between private sectors and government. She is driven to better the lives of all Nunavumiut through employment, training development and mentorship. Malaya is also the owner of an Inuit consulting company, Malti Consulting Ltd. Malaya has three grown children and three step-children and is also a proud grandma.
For Malaya, Not deciding alone work is meaningful for Inuit who are going through the healthcare journey, to have a better understanding of the processes that your journey does not end with you, you have options to have family members involved in the say of your health and not having to make difficult decisions alone.
I like that this committee includes many Inuit who also want to contribute to the expansion of this knowledge wherever Inuit might be.”
Kelly (kaummajuk) is Inuk and Settler, born in central Labrador. As a youth, she split her time between practicing traditional ways in Labrador and living in the south. She graduated with her bachelor of Social Work from Memorial University of Newfoundland in 2009 and has 13 years of experience in the helping field including mental health counselling for the Inuit community, as the clinical team lead for a counselling team, and most recently, as the Manager of Strategic Initiatives at Mamisarvik Healing Centre in Ottawa. Kelly has also participated in activism with regard to resource extraction projects and appropriate access to healthcare supports. As such, Kelly has diverse competencies in mental health, group facilitation, advocacy, housing supports management and community consultation. Kelly believes the path to healing is through culture and reconnection.
For years, Kelly has been a voice in the creation of an Inuit model of wellness – including, most recently, the Inuit Mental Health Model – a decolonial approach to mental health training for Inuit. She continues to participate in such through collaborative explorations of what Inuit mental health means via consultation with collateral resources and community members and uses this information to steer necessary program/structural development. Kelly has a passion for healing, mental wellness, and Inuit excellence that she channels into all the work she does. In her spare time, Kelly is invested in fitness and the mind-body connection.
For Kelly, Not Deciding Alone work means breaking down barriers that have previously prevented Inuit from fully understanding they have choices, and respecting Inuit to make these choices in an informed, collaborative way.
Lily was born and raised in Iqaluit, Nunavut. She enjoys helping people and went to Nursing school, then practised in the ER. She is currently the Manager for the Regional Cancer Program at Tungasuvvingat Inuit and a facilitator trainer for Inunnguiniq Parenting Program. Lily loves spending time with her family (especially her Grandchildren) and spending time with Elders and learning from them.
Theresa has extensive experience with the Government of Nunavut Department of Health. She was a community health representative in Iqaluit, and has now been the Territorial Community Health Representative Coordinator (TCHRC) for many years. She is based in Iqaluit at the Department’s Headquarters, where her knowledge of community level needs, experience in the nursing program, and good-natured attitude, contribute to building great programs at the community level and great programs to support all of our amazing CHRs. Her education background is in nursing, health promotion, research and emerging leadership.
In the work that Theresa does with the Government of Nunavut, she utilizes the Inuit Qaujimajatuqangit principles* (IQ principles are the Inuit societal values and bring the expertise to health and wellness of Inuit) to the team she works with. She often participates in consultations on behalf of the Department of Health Government of Nunavut on initiatives that relate to health and wellness of Inuit. Theresa also delivers training on health promotion related to Community Health Representatives (CHRs) across Nunavut pertaining to their roles and responsibilities to further build their knowledge, skills and competencies in the roles they do.
Mackenzie Daybutch works at The Ottawa Hospital as the Program Coordinator for the Regional Indigenous Cancer Program. Mackenzie is Ojibway from Mississauga First Nation #8 in North-Eastern Ontario, where she is a status band member, bear clan and inter-generational residential school survivor. Mackenzie holds diplomas in Social Services, Child and Youth Counselling and Indigenous Studies. Mackenzie’s work experience involves child welfare, education, case management and crisis intervention in the non-profit and residential sectors. Her passion is in the field of health care and she advocates strongly for social justice and equitable services for Indigenous people. Mackenzie brings a wealth of knowledge from the community level, for both urban Indigenous populations and on-reserve Indigenous populations. She hopes that one day all Indigenous and marginalized folks will experience a place of belonging within the medical sector.
Gwen Barton has worked for more than 20 years in health and social services. She holds a Bachelor of Nursing Science from Queen’s University and a Masters in Health Administration from the University of Ottawa. She is currently the Manager of Indigenous Cancer Program at The Ottawa Hospital Patient Experience and is the designated lead for Patient Engagement and Experience. She works closely with First Nations, Inuit and Métis partner organizations in the Champlain Region and in Nunavut and is passionate about improving access to care and the overall cancer care experience for all.
Carolyn Roberts is The Ottawa Hospital’s first Indigenous Nurse Navigator for the Indigenous Cancer Program. Since 2016 she has pioneered a suite of innovative interventions that help traditionally marginalized patients, particularly the Inuit of the far north, to exercise their autonomy in health care decisions. In a very short time her approach has gone from radical to indispensable. Carolyn’s work with the First Nations, Inuit and Metis communities have been highlighted at the regional, provincial, national and International levels through various media interviews, multiple hospital and university speaking engagements (McGill, Mount Royal, Carleton) and various recognitions and awards. Carolyn and the Indigenous Cancer Team are seeing a change in culture within our interprofessional team. Their understanding and genuine care and concern for improving the patient experience is at times very palpable in a complex health care system.
Alex holds a Bachelor of Arts degree in Political Science, a Master of Arts degree in Conflict Studies, and a Graduate Diploma in Conflict Resolution. In 2017, Alex qualified as an accredited Child Protection Mediator with the Ontario Association for Family Mediation. Alex has spent her career working alongside the Indigenous community in the field of consultation and child welfare. Alex currently works for Tungasuvvingat Inuit as the Senior Policy and Program Advisor within the Kamatsiarniq (child welfare) Team. When she’s not working, Alex enjoys spending time with her family and traveling.
Researchers
Ms. Kimberly Fairman is Nunavummiut and her home community is Taloyoak, NU. She joined the Institute for Circumpolar Health Research (ICHR) as Executive Director after over 20 years in the federal and territorial public service with senior responsibilities in all three northern territories. She was trained as a nurse at Aurora College and completed a Master of Public Health degree at the University of Alberta. She plays an important role by engaging with communities and building northern capacity for health research. Kimberly is showcasing the valuable contribution of northern communities, practitioners and indigenous knowledge holders to the modern research agenda. She serves on the Board of Directors for the Canadian Society for Circumpolar Health, and is a member of the Polar Knowledge Board of Directors.
I think the work with “Not Deciding Alone” is meaningful because it is empowering Inuit in the Baffin region to be the decision maker in their own health journey. For too long, Inuit have simply been told what to do or how to take care of themselves with no consideration given to their expertise and strength when it comes to their own wellbeing. The NDA team is changing that through this project and with the involvement of community members and patients. I love the meetings, I feel totally comfortable to share my ideas and to add to the discussion because it is a safe space and an accepting space for different points of view. We support each other.”
Brittany has been a part of the Not Deciding Alone team since 2019, first as a Steering Committee member and now as the project’s research coordinator. Brittany previously worked at Tungasuvvingat Inuit since 2018 in a variety of roles including in the cancer program and at Mamisarvik Healing Centre. It was at TI that her commitment to contribute to improving health equity and wellness for Inuit began. Now based in Toronto, Brittany is completing her Masters of Public Health degree in Social and Behavioural Health Sciences at Dalla Lana School of Public Health (University of Toronto). What she values most about being a part of the Not Deciding Alone team is how we work together and having a space to continually learn and share openly and authentically.
Our team is made up of diverse and passionate members and is built on long-term relationships and partnership. The way that we do what we do is reflexive, and we are constantly thinking about and discussing how we can continue to do better and how our work can be most useful. That willingness to work together, adapt and evolve over time is what I think makes this project and team exciting and meaningful.”
Janet Jull, PhD, is a settler of Euro-Canadian descent. Janet is a researcher and Assistant Professor in the School of Rehabilitation Therapy, at Queen’s University. When Janet worked as a healthcare provider, she was concerned by the ways in which health systems failed to meet the needs of the people it was meant to benefit. As a result, Janet now develops research studies in close partnerships with several communities. The research studies are aimed at learning how to enhance opportunities for people to participate in their health decisions. Janet also studies how to do research in ways that are respectful, inclusive and collaborative. Janet has been working with Inuit and those who provide health services to Inuit, to develop shared decision making tools and approaches in the project ‘’Not Deciding Alone”.
I really enjoy being part of the team and working with the Steering Committee and the networks with which our team is connected. It is a lot of fun to work together, and there are wonderful ideas. Best of all (for me) is that there is genuine interest in one another and the community we are striving to serve with our work. The term “shared decision-making” translates in Inuktitut to “Not Deciding Alone” and so that is the name of our project. We could not do any of our work without the knowledge, leadership and support of community. I’ve been so grateful to work with our team, Inuit community and others in our networks. It means a lot to learn together about how to make respect and kindness integral to best practice in research and health care.”
References
[1] Inuit Tapiriit Kanatami (ITK). (2018). National Inuit Research Strategy.
[2] Makoul, G. and Clayman, M. (2006). An integrative model of shared decision making in medical encounters. Patient Education and Counseling, v. 60(3).
[3] Coulter, A., and Collins, A. (2011). Making Shared Decision-Making a Reality. The King’s Fund.
[4] Frosch D, Moulton B, Wexler R, Holmes-Rovner M, Volk R, Levin C. (2011). Shared decision making in the United States: policy and implementation activity on multiple fronts. Journal of Evidence and Quality in Health Care: v. 105(4):