Pioneering Inclusive Patient-Oriented Research: Indigenous Knowledge and the Etiology of Community-Based Healthcare Approaches

Thanks in part to the work that we do at the CHILD-BRIGHT Network, patient-oriented research has been growing as a groundbreaking paradigm in healthcare in Canada that emphasizes active involvement and collaboration with people with lived experience and their communities in all aspects of the research process. This approach recognizes the unique value of lived experiences and local insights in shaping effective healthcare solutions. While patient-oriented research has gained prominence in recent years, it's important to acknowledge that Indigenous Knowledge and practices have long been pioneering the principles that underpin community-based healthcare approaches. Incorporating Indigenous Knowledge in patient-oriented research enhances the value of cultural diversity, fosters community engagement, and results in healthcare approaches that are effective as well as culturally sensitive.

The synergy between Indigenous Knowledge and patient-oriented research

Indigenous communities across Canada possess a rich tapestry of knowledge and practices that have been nurturing community well-being for centuries. Rooted in the interconnectedness of all aspects of health—physical, mental, emotional, and spiritual—Indigenous Knowledge offers profound insights into holistic healthcare.

Incorporating Indigenous Knowledge in patient-oriented research offers a unique opportunity to bridge the gap between Western medical practices and Indigenous healthcare traditions. It acknowledges that healthcare solutions are most effective when they are rooted in cultural context and community needs. By drawing on the strengths of both worlds, healthcare researchers can develop interventions that are not only clinically sound but also respectful of cultural diversity and community values.

Key contributions of Indigenous Knowledge to patient-oriented research 

Holistic health perspective: Indigenous communities often view health holistically, recognizing the interconnectedness of physical, mental, emotional, and spiritual well-being. This holistic approach emphasizes the importance of addressing all these aspects for child development and wellness. For instance, it ensures that children are supported in all dimensions of their health[1].

Community-centered care: Indigenous communities value community-based care and support networks. In patient-oriented research, involving the community in decision-making and research co-design can lead to more relevant and effective interventions. For example, the Mohawk Nation's approach to child development often involves Elders and community members in decision-making, ensuring cultural relevance and community engagement[2]. In patient-oriented research, involving the community in decision-making and research design can lead to more relevant and effective interventions.

Land-based healing: Many Indigenous cultures hold the belief in the healing potential of the land, where land-based activities like hunting, fishing, and traditional food practices can be integrated into healthcare strategies aimed at enhancing child development and overall well-being. An illustrative example of this practice is found in the Inuit community of Nunavut, which incorporates traditional land-based activities into child development programs, notably the Makimautiksat Youth Camp. This program adopts a holistic approach to youth wellness, drawing upon Inuit wisdom and traditions encompassing physical, mental, emotional, and spiritual well-being, and supplements these elements with land-based components guided by Elders and knowledge keepers[3]. Through this comprehensive approach, this fosters cultural heritage with contemporary research[4].

Cultural safety, sensitivity, and humility: Cultural safety in healthcare involves providing care that respects and acknowledges the cultural beliefs and practices of Indigenous people. This approach can help reduce healthcare disparities and improve healthcare outcomes. The Anishinaabe Nation in Ontario places a strong emphasis on cultural humility in healthcare, ensuring that providers continuously learn from and respect the cultural diversity of their patients[5][6]. Patient-oriented research recognizes these principles as essential for reducing healthcare disparities and improving patient outcomes.

As we move forward in our healthcare journey, embracing patient-oriented research as a transformative approach, let's also honour the pioneering contributions of Indigenous Knowledge. By uniting the strengths of both Indigenous wisdom and patient-oriented research, we can build a healthcare system that not only prioritizes clinical excellence but also celebrates cultural diversity, community values, and the power of lived experiences. The synergy between Indigenous Knowledge and POR is a testament to the potential for collaboration and innovation in creating a healthier, more inclusive future for all.

Want to learn more about our work in Equity, Diversity, Inclusion, Decolonization, and Indigenization (EDI-DI)? Read our EDI-DI framework here.

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[1] https://www.mcgill.ca/tcpsych/files/tcpsych/Report8.pdf Oblin, C. (1997). (rep.). Widening the Circle: Collaborative Research for Mental Health Promotion in Native Communities (Vol. C, p. 32). Montreal, QC: McGill University.

[2] Viscogliosi C, Asselin H, Basile S, Borwick K, Couturier Y, Drolet MJ, Gagnon D, Obradovic N, Torrie J, Zhou D, Levasseur M. Importance of Indigenous elders' contributions to individual and community wellness: results from a scoping review on social participation and intergenerational solidarity. Can J Public Health. 2020 Oct;111(5):667-681. doi: 10.17269/s41997-019-00292-3. Epub 2020 Feb 27. PMID: 32109314; PMCID: PMC7501322.

[3] Indigenous Land-Based Healing Programs in Canada - nwtspor.ca. Hotıì ts’eeda Northwest Territories SPOR Support Unit. (2019, November 6). https://nwtspor.ca/sites/default/files/2019-11-06_ht_lit_review_indigenous_land-based_healing_final.pdf

[4]  Shirley Tagalik, S. (2012, January). Inuit Qaujimajatuqangit: The role of Indigenous knowledge in supporting ... he National Collaborating Centre for Indigenous Health . https://www.ccnsa-nccah.ca/docs/health/FS-InuitQaujimajatuqangitWellnessNunavut-Tagalik-EN.pdf

[5] FNHA Policy Statement: Cultural Safety and Humility." First Nations Health Authority, www.fnha.ca/Documents/FNHA-Policy-Statement-Cultural-Safety-and-Humility.pdf

[6] Indigenous History and Health Systems Transformation Booklet." Indigenous Primary Health Care Council, iphcc.ca/wp-content/uploads/2022/09/Indigenous-HST_Booklet.pdf

Join Us as an Indigenous Co-Lead for Equity and Inclusion at CHILD-BRIGHT!

The CHILD-BRIGHT Network is searching for an Indigenous Co-Lead to collaborate with Dr. Nomazulu Dlamini, Program Lead of our Equity, Diversity, Inclusion, Decolonization & Indigenization (EDI-DI) Program. If you are a Canadian academic leader with a deep commitment to equity, diversity, and inclusion in children's health, and if you share our vision of inclusive research environments, we encourage you to take part in co-steering the efforts of the CHILD-BRIGHT EDI-DI Program from 2023 to 2026.  

About CHILD-BRIGHT

The CHILD-BRIGHT Network is a pan-Canadian patient-oriented research network based at the Research Institute of the McGill University Health Centre. Created in 2016, it works to create brighter futures for children and youth with brain-based developmental disabilities and their families. Funded by the Canadian Institutes of Health Research (CIHR) under Canada’s Strategy for Patient-Oriented Research (SPOR) and 15 funding partners across the country, our national network includes 350 researchers, clinicians, decision-makers, youth, and parents.

CHILD-BRIGHT’s extensive research program was developed based on research priorities identified by youth, parents, and other knowledge users such as frontline clinicians and health care administrators. From 2016 to 2022, CHILD-BRIGHT carried out 13 multi-centre projects focusing on three themes: early intervention to promote brain and child development; strategies to support the mental health of children and families; and service delivery redesign to address gaps in service. From 2022 to 2026, CHILD-BRIGHT is moving its patient-oriented research into action through insight and methods grounded in implementation science and knowledge mobilization, and by embedding the principles of equity, diversity, inclusion, decolonization and Indigenization.  

Position Overview: Indigenous Co-Lead for the EDI-DI Program  

We are seeking an exceptional individual to work alongside Dr. Nomazulu Dlamini, Program Lead of our EDI-DI Program, to co-steer the efforts of the CHILD-BRIGHT EDI-DI Program. Your role will be pivotal in ensuring that the principles of equity, diversity, inclusion, decolonization, and Indigenization are authentically embedded across all aspects of CHILD-BRIGHT's work, making a lasting impact on childhood disability research.  

Duties and Responsibilities

• Collaborate with Dr. Dlamini to lead the EDI-DI Program and oversee its staffing and Indigenous advisory council.  

• Champion initiatives that embed EDI-DI principles in all of CHILD-BRIGHT's programs and governance structure.  

• Play a central role in advancing research excellence through health equity using an intersectional approach.  

• Ensure that all EDI-DI activities align with CHILD-BRIGHT's EDI-DI framework.  

Requirements

• Advanced degree in a relevant field, with expertise in equity, diversity, and inclusion.  

• A passion for promoting equity and inclusion in children's health.  

• Proven leadership skills and experience in driving meaningful change.  

• Strong communication skills and the ability to collaborate effectively.  

• An understanding of children with brain-based developmental disabilities and its intersection with equity.  

How to Apply

We invite Indigenous candidates with a deep commitment to Indigenization, equity, diversity, and inclusion to apply. Join us in co-steering the efforts of the CHILD-BRIGHT EDI-DI Program, making a significant impact on childhood disability research and patient-oriented research. Please send your application by September 15, 2023 to edi-di@child-bright.ca and be a driving force for positive change in children's lives.   

Note: Accommodations are available upon request for all candidates participating in the selection process.  

Join us in creating brighter futures for children and youth with brain-based developmental disabilities and their families  

CHILD-BRIGHT Acknowledgement Statement for PRIDE Month and National Indigenous Peoples Day

In the month of June, we pause to commemorate and acknowledge two important occasions: National Indigenous Peoples Month and PRIDE Month. These days hold great significance in acknowledging and honouring the past and continuing experiences, contributions, and struggles of the Indigenous Peoples and the 2SLBGTQIA+ community. As part of our commitment to redress and reconcile, our Equity, Diversity, Inclusion, Decolonization and Indigenization (EDI-DI) Program actively strives to establish and maintain research, network and program environments that are equitable, accessible, and inclusive.

On June 21 we join the nation in honouring National Indigenous Peoples Day. It is a day to recognize and appreciate the rich cultural heritage, wisdom, and resilience of Indigenous Peoples. We acknowledge the historical and ongoing injustices faced by Indigenous communities and affirm our commitment to reconciliation, decolonization, and Indigenization efforts. This is a time to listen, learn, and amplify Indigenous voices, valuing their unique perspectives and knowledge.

As we observe PRIDE Month, we stand in solidarity with the 2SLBGTQIA+ community, celebrating the importance of fostering an inclusive, accepting and welcoming environment for all individuals, regardless of their sexual orientation or gender identity. We recognize the importance of advocating for their rights and well-being, striving to become better allies each day. This is a time for us to reflect on the progress made and the work that still lies ahead in fostering equity, diversity, and inclusion.

As individuals and as a society, we have a responsibility to create a world that embraces and respects the rights and dignity of all individuals, regardless of their sexual orientation or gender identity, and to honour and uplift the Indigenous Peoples who have stewarded the land for generations. This period serves as a reminder of the ongoing journey toward equity, justice, and understanding.

At CHILD-BRIGHT, we are dedicated to fostering an environment of inclusivity and social justice. We believe that every child and family deserves the opportunity to thrive, free from discrimination and with access to equitable healthcare. Through our EDI-DI Program we aim to contribute to the advancement of research excellence by embracing a health equity approach in patient-oriented research.

During this month of reflection and acknowledgment, let us reaffirm our commitment to creating a world that embraces diversity, supports equity, and champions the rights of Indigenous Peoples and 2SLBGTQIA+ individuals. Together, we can forge a path towards a more inclusive and just society, where every child's potential can be realized.

Getting to know our Phase 2 Programs: Equity, Diversity, Inclusion, Decolonization and Indigenization

As recently announced, the next phase of the CHILD-BRIGHT Network is being made possible thanks to a grant from the Canadian Institutes of Health Research (CIHR) under Canada’s Strategy for Patient-Oriented Research (SPOR), as well as matching funds from our generous partners. This support will allow us to grow from Network to Movement as we realize our mission for 2022-2026: moving our patient-oriented research into action through insight and methods grounded in implementation science and knowledge mobilization that embed the principles of equity, diversity, inclusion, decolonization and Indigenization. 

In order to achieve this vision and become a movement for change for children and youth with brain-based developmental disabilities and their families, we have brought together experts from across Canada to lead our five patient-oriented programs.  

Our Equity, Diversity, Inclusion, Decolonization and Indigenization (EDI-DI) Program will deploy initiatives to ensure that EDI-DI principles are authentically embedded in our four other programs and our governance structure. These efforts will be led by CHILD-BRIGHT’s Director of EDI-DI Nomazulu Dlamini. 

Nomazulu Dlamini  
CHILD-BRIGHT Director of EDI-DI 
Staff Neurologist, Division of Neurology, SickKids 
Associate Professor, Department of Paediatrics, University of Toronto 

We sat down with Noma to learn more about the EDI-DI Program’s plans for Phase 2: 

WHAT IS YOUR PROGRAM’S MANDATE? 

Nomazulu Dlamini: Our EDI-DI Program looks to ensure all voices, bodies, and experiences are included in all aspects of our network’s work.   

Our primary goal is to establish and maintain equitable, accessible, and inclusive research environments while advancing research excellence through health equity in patient-oriented research (POR) using an intersectional approach with other network collaborators across Canada. 

We will ground the network’s activities in our EDI-DI framework. Our principal objectives for Phase 2 include increasing our representation of equity-deserving groups across our network such as patient-partners, trainees, researchers, and participants, as well as centering the voices of people with lived experience and Indigenous Ways of Knowing & Being. This is essential to address health inequities that persist within these communities. We will also build EDI-DI training capacity into patient-oriented research to impact patient-partner engagement, training, research design, implementation science (IS), and knowledge mobilization (KM).  

HOW DO YOU PLAN TO ACCOMPLISH THIS? WHAT ARE THE MAIN TOOLS (CONCEPTS, FRAMEWORKS) THAT WILL BE USED TO FURTHER THIS MANDATE? 

ND: In 2021, we developed our EDI-DI framework, which outlines our commitments to shifting the culture of the CHILD-BRIGHT Network and actively taking part in reflective practices throughout our engagement, research, and knowledge mobilization work. In Phase 2, we will integrate the EDI-DI framework, Indigenous Ways of Knowing & Being, and impacts of intersectionality in the conduct of research focused on all children with brain-based developmental disabilities, including children from historically marginalized communities. 

In the early stages of Phase 2, we will form advisory committees to guide our work in Indigenous Health as well as in EDI and health equity. We will be intentional in hiring people with lived experiences and unique professional skills in EDI-DI, Indigenous health, and health equity in relation to POR, IS, and KM. 

Working with our Training & Capacity Building Program, we will ensure the EDI-DI lens is at the forefront within the network’s activities and develop a certificate course on the application of EDI-DI. We have begun to develop a “learning pathway” that prioritizes core training and addresses learning gaps for the entire network.  

HOW WILL YOUR PROGRAM MEANINGFULLY ENGAGE PATIENT-PARTNERS? 

ND: One of our goals as a program is to ensure CHILD-BRIGHT diversifies its representation of equity-deserving groups such as patient-partners, trainees, researchers, and participants across our network. In Phase 2, we will collaborate with our Citizen Engagement team to create and build relationships with people and communities who are currently underrepresented in our network.  

TELL US MORE ABOUT YOU. WHAT MOTIVATED YOU TO TAKE ON THIS LEADERSHIP ROLE WITH CHILD-BRIGHT? 

ND:  Reducing health disparities by improving allyship, agency, access and systems has always been a huge motivator for me. Through my research, I aim to understand the mechanisms of injury, repair and neuroplasticity of the developing brain following stroke. I’m highly committed to ensuring such advances in research translate in a clinically meaningful way and touch the lives of all individuals impacted, including those in marginalized communities, which is why I believe the work we’re doing in the CHILD-BRIGHT EDI-DI Program is so important. I’m highly engaged with patients and families and have taken on multiple EDI-DI leadership roles at SickKids and in the pediatric neurology and stroke research communities at the national and international levels. These activities have been rewarding and motivating. 

My involvement with CHILD-BRIGHT began with the Stimulation for Perinatal Stroke Optimizing Recovery Trajectory (SPORT) research project, where I was a site Principal Investigator. Then, in 2020, I co-led a workshop for the network’s executive and central office teams called “Unlocking the Power of Allyship”, which was followed by a workshop on “Understanding and Unlearning Implicit Bias”, before I accepted the position of Director of EDI-DI. 

WHY IS IT IMPORTANT TO FOCUS ON EDI-DI IN PATIENT-ORIENTED RESEARCH NOW? 

ND: Indigenous Peoples, people with disabilities, racialized people, the LGBTQQIA2S+ (Lesbian, Gay, Bisexual, Transgender, Queer and/or Questioning, Intersex, Asexual, Two-Spirit, and other affirmative ways people choose to self-identify) community, and other equity-deserving groups continue to be confronted by the effects of colonialism, systemic racism, biases, and inequities in health care. We know that the effects of health disparities are magnified by the intersection of multiple oppressions, which also exist within research.  

In order for our research to have its fullest impact possible, we need to address these inequities and reach those children, youth, and families who are most affected by the lack of social justice and health equity. We believe that patient-oriented research can offer a path towards ensuring equity by way of ongoing engagement with our patient-partners and Indigenous communities, including supportive and inclusive leadership, dedicated resources, accountability, and transparency. 

WHAT ARE YOU MOST EXCITED TO SEE IN PHASE 2?  

ND: I am excited to see the results of the culture shift we are undertaking. I hope that by creating both “safe” and “brave” spaces for us to learn from one another, we will increase our understanding of each other in a global community sense. This will provide a foundation for the substantial work that we are setting out to do and improve the impact of our patient-oriented research.  

As one of the first steps towards this culture shift, many of our network members completed a four-part EDI-DI workshop this summer. I am already seeing signs of increased knowledge and personal growth. You can see “lightbulb moments” happening by observing people’s faces, their eyes, their tears, by listening to what is said and left unsaid. It’s all very telling and makes me hopeful for the journey we are all embarking on.  

Thank you, Noma, for this insight into the EDI-DI Program!  

If you are interested in learning more about the EDI-DI Program, please reach out to our EDI-DI Program Coordinator at edi-di@child-bright.ca.  

Learn more about our other Phase 2 programs: 

Get to know our Implementation Science (IS) Research Program 

Get to know our Knowledge Mobilization (KM) Program 

Get to know our Training & Capacity Building (T&CB) Program 

Get to know our Citizen Engagement (CE) Program 

CHILD-BRIGHT National Youth Advisory Panel welcomes presentation on land acknowledgments

As we continue to do our part to root out colonialism and systemic racism in paediatric health care, we are starting conversations about Equity, Diversity, Inclusion, Decolonization, and Indigenization (EDI-DI) at every level of the CHILD-BRIGHT Network.   

Symbia Barnaby

As part of these efforts, we were delighted to welcome Symbia Barnaby to give a presentation on the importance of Indigenous land acknowledgements to members of our National Youth Advisory Panel.   

Living in northern British Columbia, Symbia is an Indigenous woman of Haida and Mi’kmaq descent. Her traditional Haida name is Guu Gang Jung and her spirit name is Warrior Woman. She has consulted, developed, and run many workshops on anti-racism, disability, inclusive education, intersectionality, and health equity through an Indigenous lens. She is currently a member of CHILD-BRIGHT's Citizen Engagement Council (CEC).   

Together, Symbia and the NYAP members discussed the following topics:   

Why land acknowledgments are important and when to use them

During the conversation, Symbia told the group that acknowledging the traditional territory we are on is part of “our collective responsibility to the truth and reconciliation process”.  

“Part of the truth and reconciliation process is truth-telling. We can’t have reconciliation without first telling the truth,” she said.   

“Every person who considers themselves Canadian has a role to help with the truth and reconciliation process. So, every time we do a land acknowledgement, that’s part of us taking up our responsibility as Canadians to engage with that process.”   

“It is also important to take the time to reflect and learn about why this acknowledgement matters to Indigenous Peoples,” adds Symbia. “This genuine commitment to understanding, learning, reflecting, and honouring is key to the relationship building process that this land acknowledgement strives to encourage.”   

Symbia also explained that land acknowledgements are a first step toward including Indigenous voices and perspectives, and shouldn’t be viewed as the end of work to advance truth and reconciliation.   

The group also discussed the many ways and times land acknowledgements can be used (e.g. in email signatures, on websites, and at the beginning of events like conferences, conventions, meetings, and webinars). 

How to find out whose traditional territory we live on

From top left to bottom right: Alix Zerbo, Knowledge Translation Coordinator; Julia Tesolin, NYAP Administrative Assistant; Roberta Cardoso, Research Associate, Knowledge Translation; Symbia Barnaby, presenter and CEC member; Corinne Lalonde, Citizen Engagement Coordinator/Project Manager; Jane O’Faherty, Communications Advisor; Hans Dupuis, NYAP member; Neela Spurway, NYAP member; Lena Faust, NYAP member; Mathias Castaldo, NYAP member; Logan Wong, Chair of the NYAP; Claire-Dawe McCord, NYAP member.

Symbia also shared some resources to help people identify which traditional territory they live on, like Native-Land.ca and Whose.Land.

The group also discussed the differences between “treaty land”, “unceded territory” or intersectional space - words often heard in land acknowledgements, but not always fully understood.   

Treaty land refers to land that Indigenous peoples agreed to share in exchange for payment, goods, or promises as part of a treaty with the Crown. Historically, treaties with Indigenous Peoples have not always been honoured.   

Unceded territory refers to land that has belonged to Indigenous people that was never surrendered or acquired by the Crown.   

There are also areas where the traditional territories of numerous Indigenous communities overlap and the communities share this land and its resources. These communities have a special spiritual, cultural, and economic connection to this land that goes back thousands of years.  

 “For some people, this is the first time they’ve ever had someone talk to them about a land acknowledgement,” she said. “Sometimes, people hear land acknowledgements all the time but they don’t understand the pieces of it.”   

“When we talk about land acknowledgements, if we don’t have that understanding of the history of Canada, it’s really hard to understand what those words mean,” she added.   

What a land acknowledgement should include

Before concluding, Symbia shared tips with the group about what to include in a land acknowledgment, such as:

• Your name, or the name of the organization, company, business, club, or group that you are writing the land acknowledgement for

• Acknowledging positionality, or how our position or the power we hold in society influences our identity. You can do this by sharing if you are a newcomer to Canada, a descendant of a family that settled in Canada, a member of an Indigenous group

• Acknowledging the traditional territory that you are on and explaining whether it is treaty land, unceded territory or intersectional space

• Your commitments or next steps to helping the truth and reconciliation (e.g. familiarizing yourself with the Truth and Reconciliation Commission’s 94 Calls to Action, adding land acknowledgements to email signatures, reading books and watching films that centre Indigenous voices, etc.).

Having cultural humility was also important, said Symbia. This means understanding that we might make mistakes, such as pronouncing a traditional territory’s name wrong, but showing that we’re doing our best.   

“Knowing that you will likely make a mistake is okay. Asking questions and telling people that you wholeheartedly want to know is really important. We need to understand that a big part of this is learning about each other and building safe connections.”  

Going beyond acknowledgement to genuine action

“Symbia’s presentation was great,” said Logan Wong, Chair of the NYAP. “I think it would be important to discuss/think about whether we want to make a collective land acknowledgement or individualized ones based on our geographic locations.”

Meanwhile, Lena Faust said: “What I particularly liked about our discussion of land acknowledgements was Symbia’s recommendation to include a statement on how each of us can go beyond acknowledgement to genuine action on honouring reconciliation in our work.”

Claire Dawe-McCord said she loved the idea of including a land acknowledgement. “It is something I do regularly for school and would be happy to carry over to this context as well,” she added.

“It’s really interesting to have an insight on topics that are not well-understood,” said Hans Dupuis. “This presentation helped to remove the doubt from certain misunderstandings I had about land acknowledgments.”

“The presentation was very informative and helped me have a greater understanding of land acknowledgments,” said Mathias Castaldo. “It showed the group how we can be supportive of Indigenous people and rights.”

NYAP Administrative Assistant and Ph.D. student Julia Tesolin said: “Symbia’s presentation allowed me to develop a more meaningful understanding of why it is so important to acknowledge the land that we live/work on, and I really appreciated her unique and personalized approach of educating us on its significance.”  

CHILD-BRIGHT's land acknowledgement can be found on our EDI-DI page.   

The NYAP, along with the entire CHILD-BRIGHT Network, are grateful to Symbia for her insights and contributions. We all look forward to doing more to centre the voices of First Nations, Inuit, and Métis communities in our work.   

CHILD-BRIGHT welcomes new members of our Citizen Engagement Council!

As CHILD-BRIGHT continues to evolve, we are increasingly working to ensure many voices are represented and heard on our Citizen Engagement Council (CEC), the body overseeing the network’s citizen engagement activities.  

With that in mind, we are thrilled to welcome three new members to the CEC, each bringing their own lived experiences and expertise to the table.  

Chaired by Sharon McCarry, CHILD-BRIGHT’s Director of Citizen Engagement, the CEC provides guidance to researchers on how to engage patient-partners, including parents of children and youth with brain-based developmental disabilities, in their work, and how to share information with them. In addition, the council advises the network on the development and implementation of evidence-informed practices, policies, services, and programs to improve patient outcomes, access to care and quality, efficiency, and effectiveness of health care.  

“I am delighted to welcome new and returning members to the Citizen Engagement Council,” said Sharon.  

“Our council brings together individuals with a range of experiences and perspectives around the same goal of making research more patient-oriented. I am excited about the change we will bring through our shared commitment.” 

The new members commenced their term in September 2021. Get to know them a little better below.  

Symbia Barnaby 

Symbia Barnaby is an Indigenous woman of Haida and Mi’kmaq descent living in northern British Columbia. Her traditional Haida name is Guu Gang Jung and her spirit name is Warrior Woman. She is a single mother of six children, five of whom have special needs. She is trained as a practical nurse, a birth and postpartum doula, and a Reiki Level 3 Practitioner. She is also a storyteller, a filmmaker, and a Wisdom Translator.  

She has consulted, developed, and run many workshops on anti-racism, disability, inclusive education, intersectionality, and health equity through an Indigenous lens.  

Symbia also volunteers as the Co-Lead of the Health Advocacy Team with Moms Against Racism Canada, a national non-profit organization.  

Samadhi Mora Severino 

As the parent of two children, one who has severe disabilities, Samadhi Mora Severino has been a parent-partner and Parent Advisory Committee member with the Strongest Families Neurodevelopmental Program since its beginnings. She is also an emerging equity researcher in the areas of health and disability services and policy. 

A community advocate working with families of children with a neurodevelopmental disability and other disabilities, Samadhi is dedicated to making relevant and important changes in disability services and policies through equity, diversity, and inclusion. 

Samadhi’s experience includes research with children with complex disabilities, adults with disabilities, and Indigenous people with disabilities living in Ontario. As a Ph.D. student at York University, she uses mixed methods and participatory action research in relation to medical assistance in dying (MAiD), home care access, and palliative care access for people with disabilities in Canada.  

Samadhi has served as a member of the technical working group of Ministry of Health and Long-Term Care in Ontario to develop a provincial program for self-directed funding for children with medical complexity. She was previously a community board member for the research ethics board at Public Health Ontario. 

Phil Snarr 

Phil Snarr is from Winnipeg, Manitoba. He and his wife Marilyn have two children, their daughter Julia (aged seven) and their son Jack (aged five). 

Jack lives with cystic fibrosis (CF), and Phil and his family are actively involved in the CF community, both in Winnipeg and across Canada. In their down time, Phil and his family enjoy playing board games, going fishing, and swimming.  

Phil holds a Science degree in Microbiology and Chemistry from the University of Manitoba. Today, Phil works at the Medical School at the University of Manitoba, where his interests include pediatric research, patient-oriented research, and knowledge translation.  

“I think that citizen engagement is incredibly important in both the clinical health setting and in health research,” Phil says. “I am excited to join the Citizen Engagement Council and to share my experiences with the group.” 

Welcoming Carrie Costello as Vice-Chairperson of the CEC 

Carrie Costello (right) with daughter Emma

Alongside our new members, we are also delighted to welcome Carrie Costello as Vice-Chairperson of the CEC. 

Based in Winnipeg, Carrie is a mom to three daughters, one of whom has global developmental delays and a seizure disorder with Todd’s paresis. As CHILD-BRIGHT's Parent Peer Mentor, Carrie has already made invaluable contributions to the work of the council and the entire network. You can read more about Carrie and her work as a parent-partner in this blog post.