2024 Frank Gavin Patient Engagement Leadership Awards

Now Accepting Applications!

The CHILD-BRIGHT Network is proud to launch the third iteration of the Frank Gavin Patient Engagement Leadership Award, which recognizes exceptional patient engagement leadership in pediatric brain-based disability research. Established in 2021, the award was named in honour of Frank Gavin, our former Director of Citizen Engagement, for his vital contributions to the network’s impressive growth as a SPOR entity. 

This year, we are pleased to announce that we will be granting a Frank Gavin award to not one, but two patient-partners: a parent, caregiver, or family member with lived experience, as well as a youth or former pediatric patient with lived experience. 
 
Do you know a patient-partner with considerable experience participating in patient-oriented research activities, and with proven leadership in patient engagement? Would you like to put your own name forward? We’re accepting nominations as of today!

Nominations are due by March 28, 2024

Visit the competition page for all the details, including the eligibility requirements and application guidelines. Good luck! 

Postdocs in the Spotlight: Alicia

Welcome to our new blog series highlighting the work of our Azrieli CHILD-BRIGHT postdoctoral fellows!

Within the various research projects underway at the CHILD-BRIGHT Network, postdoctoral fellows play a crucial role. This year, thanks to the generous contribution of the Azrieli Foundation, we’re delighted to welcome a new cohort of up-and-coming scientists who are passionate about patient-oriented research (POR) and its incredible potential in the study of pediatric brain-based developmental disabilities. In the next few weeks, we’ll be showcasing each of our postdocs and the pivotal work they’re doing at CHILD-BRIGHT, across Canada. 

INTERPLAY PROJECT

Alicia Hilderley (she/her)

Postdoctoral fellow | Department of Rehabilitation Science, University of Calgary 

Alicia is joining CHILD-BRIGHT as a member of the pre-implementation project INTERPLAY: Implementation of iNtensive Therapy for Early Reach through PLAY. Led by principal investigators (PI) Adam Kirton, Darcy Fehlings, and John Andersen, the research team is gathering information on why early hand therapy for young children with cerebral palsy is or isn’t being implemented. The goal is to then use this information to identify strategies to support implementation across Canada.

“I’m involved in seeing the project through four consecutive phases,” says Alicia. The project team includes both parent partners and knowledge-user partners (namely, occupational therapists and health care administrators) with whom Alicia works closely to find solutions and integrate feedback. 

“I’m firm in my belief that the only way to advance rehabilitation practice is to design patient-oriented research that engages children and families as partners.”

— Alicia

Alicia has always been keen to learn from and with people with lived experience—an interest that has played a major role in steering her research career. “Partnerships provide opportunities for in-depth conversations and knowledge exchange with children and families,” she says. “This helps us design research that’s pertinent to them.” 

Alicia points out that learning from those with lived experience can facilitate and improve the quality of research across all stages, often in unexpected ways. “By aligning with patient priorities, we can improve the meaningfulness of our projects and have a greater impact, which I believe should be a goal for all clinical researchers.” 

Alicia is certain that this fellowship will help shape her future as an emerging research partner and advocate. “The skills I’m acquiring will help me effectively integrate patient perspectives to co-build high-calibre research.” Alicia is also delighted to be gaining valuable experience in implementation science, a field that she believes is essential in bridging the gap between research findings and clinical practice.

Postdocs in the Spotlight: Catherine

Welcome to our new blog series highlighting the work of our Azrieli CHILD-BRIGHT postdoctoral fellows!

Within the various research projects underway at the CHILD-BRIGHT Network, postdoctoral fellows play a crucial role. This year, thanks to the generous contribution of the Azrieli Foundation, we’re delighted to welcome a new cohort of up-and-coming scientists who are passionate about patient-oriented research (POR) and its incredible potential in the study of pediatric brain-based developmental disabilities. In the next few weeks, we’ll be showcasing each of our postdocs and the pivotal work they’re doing at CHILD-BRIGHT, across Canada. 

PARENT VOICES PROJECT & KM PROGRAM 

Catherine Demers (she/her)

Postdoctoral fellow | Department of Occupational Science and Occupational Therapy (OSOT), University of British Columbia 

Catherine, a Vancouver-based postdoctoral fellow, divides her time between the Parent Voices project with the Parent-EPIQ research team and the Knowledge Mobilization (KM) program. The Parent Voices project, transitioning from Phase 1 to Phase 2, is focusing on implementing new patient-reported outcome measures (PROMS) in neonatal follow-up programs across Canada. Led by principal investigator (PI) Thuy Mai Luu, this initiative aims to better address parents’ needs and priorities in the medical follow-ups of children born preterm. 

“My role is to oversee the different steps of the project, from submitting ethics applications to conducting interviews, and collaboratively building the implementation plan with different teams,” says Catherine. Within the KM program, led by PI Stephanie Glegg, she contributes to various projects, including the Social Network Analysis study and program evaluation.

As an occupational therapist with a strong clinical background, Catherine’s commitment to patient-oriented research (POR) stems from a desire to collaborate with patients and make real improvements to our health care system. “Patient engagement inherently aligns with patient-centered values of occupational therapy,” says Catherine. She believes a POR approach enhances research relevance and promotes patient-centered care and, ultimately, better health outcomes. 

“I strongly believe that incorporating the patient’s perspective into research significantly improves outcomes in our health care system. Patients offer unique insights that may not be apparent from a purely clinical or research standpoint.”

— Catherine

Just a few months into this fellowship, Catherine can already see its profound impact on her career trajectory. Her previous work and research experience was almost exclusively gained in Montreal within tertiary (i.e., extremely specialized) care. Joining the CHILD-BRIGHT Network and relocating to Vancouver has significantly broadened her horizons. “Working for a pan-Canadian network, learning about new research methodologies, and connecting with such a diverse team of passionate individuals has already been transformative,” says Catherine.  

She anticipates that she’ll learn how best to engage with and address patient needs, deepen her understanding of implementation science, and expand her professional network. “The insights I gain will not only contribute to my current role, but also align with my long-term goal of conducting research that improves health outcomes and quality of life for children.”

Postdocs in the Spotlight: Sevinj

Welcome to our new blog series highlighting the work of our Azrieli CHILD-BRIGHT postdoctoral fellows!

Within the various research projects underway at the CHILD-BRIGHT Network, postdoctoral fellows play a crucial role. This year, thanks to the generous contribution of the Azrieli Foundation, we’re delighted to welcome a new cohort of up-and-coming scientists who are passionate about patient-oriented research (POR) and its incredible potential in the study of pediatric brain-based developmental disabilities. In the next few weeks, we’ll be showcasing each of our postdocs and the pivotal work they’re doing at CHILD-BRIGHT, across Canada. 

training & capacity-building program

Sevinj Asgarova (she/her)

Postdoctoral fellow | School of Social Work, University of British Columbia 

Sevinj is a postdoctoral fellow with the CHILD-BRIGHT Training & Capacity Building Program, which offers courses, workshops, and seminars on patient-oriented research (POR) for researchers, trainees, and patient-partners with lived experience. 

Under the supervision of program co-lead Daniel Goldowitz, Sevinj is evaluating the capacity-building initiatives that support successful career paths for emerging patient-oriented researchers in the field of pediatric brain-based developmental disabilities. Currently, she's looking at the impact of CHILD-BRIGHT’s Graduate Fellowship in POR and how the program could be improved. 

“I think it’s important for us to move patients into research teams and move research into improved practice, ultimately leading to better quality of care.”

— Sevinj

Sevinj has long been interested in POR and is happy to see that there has been a concerted effort in the research world to move towards a model of patient-centred care. But a lack of training and knowledge in POR, among both researchers and patients, is a major barrier to change. This need is what ultimately drew Sevinj to CHILD-BRIGHT's Training & Capacity Building Program, where she’s helping to evaluate existing capacity-building opportunities and POR strategies. 

“Listening to patient-partners will help us direct our research priorities,” says the Vancouver-based postdoc. “And in the long term, it will lead to improved outcomes in a health care system that better reflects the needs of those it serves.” 

Sevinj knows that the skills and knowledge she’s acquiring will have a lasting impact on her future. “It’s a great opportunity!” she says. “I’m conducting research evaluations, disseminating my work through manuscripts and conferences, and even improving my grant writing skills.” Sevinj, who plans to focus her own research on pediatric brain-based developmental disabilities after completing the fellowship, firmly believes that everything she’s learning will help her reach the next phase in her career. 

Marlyn Bennett is our new EDI-DI Program co-lead!

We are thrilled to announce that acclaimed interdisciplinary researcher and academic Marlyn Bennett will be joining the CHILD-BRIGHT Network’s EDI-DI Program as co-lead with Nomazulu Dlamini. Marlyn’s 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.

Marlyn Bennett

Faculty of Social Work and Werklund School of Education | University of Calgary

Faculty of Social Work | University of Manitoba

2023 Canada Research Chair for Indigenous Children’s Wellbeing

EDI-DI Co-Lead at the CHILD-BRIGHT Network

About Marlyn

Marlyn is Anishinaabe from the Treaty 1 community of Sandy Bay Ojibway Nation in Manitoba, Canada. She recently joined the University of Calgary’s Faculty of Social Work and Werklund School of Education as the 2023 Canada Research Chair for Indigenous Children’s Wellbeing. In addition, she remains an adjunct professor in the Faculty of Social Work at the University of Manitoba.

Marlyn’s background is layered and multidisciplinary. At 24, she went to law school with the plan of becoming a lawyer. “But I got sucked into social work,” she says with a laugh. “I also became a mother, which affected my plans.” After leaving her law degree, Marlyn sought out roles in connection with Indigenous child welfare and family services, both within and outside of academia. She worked as a policy analyst, a research assistant, and a seasonal lecturer before finally beginning a degree in social work at the University of Manitoba in 2003. She went on to complete an interdisciplinary Ph.D. in 2016.

Today, Marlyn's research is centred on the experiences of Indigenous women and youth within the child welfare system. “My focus is really on the wellbeing of Indigenous children,” says Marlyn, who went into foster care herself at age 12 after her mother’s passing.

Storytelling in health research

A strong proponent of arts-based approaches and qualitative research methodologies, Marlyn is particularly interested in how storytelling methods can be applied within Indigenous health research. One method she’s especially known for is digital storytelling: an innovative, collaborative process that combines traditional storytelling and digital technologies. Using visuals and audio, participants tell personal stories through the creation of short video clips. 

“Digital storytelling is also a land-based approach,” says Marlyn. “It’s about bringing Indigenous people together in a cultural gathering, where they’re out on the land. It gives them access to their community, their Elders, the land, and each other.” 

Marlyn first learned about digital storytelling in 2013, through a project organized by the University of Winnipeg’s Oral History Centre on the intergenerational effects of residential schools. Marlyn created her first digital story, My Mother’s Love Was in a Bowl of Porridge, which explores her complex relationship with her mother. The experience, she says, was truly eye-opening. “I loved it!” she says. “I loved being able to tell my story my way.” It also had a profound effect on her research: during her Ph.D., Marlyn began to use digital storytelling with former youth in care. 

Screenshot of Marlyn’s digital story, My Mother’s Love Was a Bowl of Porridge.

Photovoice is another method that Marlyn applies in her work. This approach involves giving participants a camera and asking them to take photographs in response to a question. Afterwards, they’re given the opportunity to talk about the meaning behind their photos. “You get such rich detail, because people are so passionate," says Marlyn. “They want to tell their stories. It’s not intimidating to them.” She adds that photovoice participants are given food before and after the photo-taking, to create a sense of ceremony and warmth.

Highlighting Indigenous perspectives

Marlyn first became involved with CHILD-BRIGHT in 2022 when her friend and fellow researcher Lucyna Lach invited her to join the network’s Indigenous Advisory Council, which aims to guide and inform CHILD-BRIGHT's work. Lucyna was also the one who recommended Marlyn for the EDI-DI Program. “She suggested that I would be a really excellent person for the role,” says Marlyn.  

When asked what she hopes to bring to the program as co-lead, Marlyn doesn’t hesitate. “I want to make sure that Indigenous Ways of Knowing and Being are considered. That we’re being mindful of the incredible diversity of Indigenous communities in this country: North to South, on reserve and off reserve.” Indigenous People, Marlyn points out, have always been here. “We’re unique. Our issues are different than those experienced by other ethnic groups in Canada. It’s important that we engage with these differences as we consider things like patient engagement and hospital care.” 

“Some Indigenous people have lost connection with their communities. There’s a spectrum: those who know who they are, those who are still on the path, and those in various stages in between.”

— Marlyn

Marlyn is also keen to explore cultural safety (i.e., when a person feels safe receiving health care). “If a person doesn’t know how to ask for services that make them feel safe, we need to teach them how to advocate for themselves,” she says. As an example, she says she would love to walk into a hospital room and smell sweetgrass. 

Overall, Marlyn is passionate about bridging Indigenous and Western perspectives in health care, and she highlights the importance of recognizing the strengths in how Indigenous People see the world. “We need to see ourselves reflected in those spaces,” says Marlyn. “But better yet, we need to have services that are local to our communities.”