[Pictured above: new Jason Smith Research Tower. Photo credit: Tom Arban Photography]
Dawn of a new era
Five years ago, Holland Bloorview launched a bold fundraising campaign for the largest research expansion in its 124-year history.
With the unveiling of the Jason Smith Research Tower and newly renovated spaces within the Bloorview Research Institute at a public launch on June 13th, the institute accelerating its research in childhood disability and developmental differences to new heights – and create an even greater impact on children, youth and families around the world. Learn more
Introducing SwitchApp: Thanks to new funding from the Accessible Technology Program, the PRISM Lab can advance its research on expanding digital access for people with disabilities with a new personalized assistive technology. Learn more
The power of data science: A new partnership between the BRI and U of T’s Data Sciences Institute will enable researchers to leverage data to enhance access and address inequities in healthcare. Learn more
Accelerating research through AI: the Bloorview Research Institute joined other partners and DNAstack to launch Neuroscience AI, a virtual platform that researchers can use to collaborate on neuroscience research and make scientific discoveries using larger and more diverse datasets. Learn more
More BRI stories can be found here.
Grants and Awards
Dr. Tom Chau
Expanding digital access and employment readiness through a personalizable access technology: SwitchApp (Innovation, Science and Economic Development Canada – Accessible Technology Program)
2023 – 2024
Dr. Tom Chau
Enriching the Quality and Depth of Ontario’s Pediatric Care Through the Use of Smart Textiles and Integrated Remote Monitoring (Ministry of Colleges and Universities: Ontario Research Fund – Research Excellence Program)
2023 – 2024
Dr. Shannon Scratch
Return to Play with R2Play-Para: developing an integrative and inclusive concussion assessment for youth with disabilities (CIHR – doctoral research awards: Canada Graduate Scholarships)
2023 – 2026
Dr. Darcy Fehlings
Combined In-Person and Internet-Delivered Cognitive Behavioural Pain Management for Children and Youth with CP: A Clinical Feasibility Trial (Ontario Ministry of Health: AHSC AFP Innovation Fund)
2023 – 2025
Dr. Sally Lindsay
Exploring ableism and racism among youth with disabilities (SSHRC – Special Initiatives Fund)
2023 – 2024
Dr. Sally Lindsay
Accessible, affordable independent housing for people with disabilities (SSHRC – Knowledge Synthesis Grant)
2023 – 2024
Dr. Amber Makino
Developing Care Pathways in Outpatient Pediatric Rehabilitation Care for Children with Neuromotor Conditions Using Quality Improvement Methodology (Ontario Ministry of Health: AHSC AFP Innovation Fund)
2023 – 2025
Dr. Iskra Peltekova
An online education tool for pediatricians to enhance the delivery of genetic services to patients with neurodevelopmental disorders (GenEd-NDD): creation, implementation, and evaluation (Ontario Ministry of Health: AHSC AFP Innovation Fund)
2023 – 2025
Dr. Melanie Penner
Project ECHO Autism Diagnosis and Integrated Care Opportunities (ECHO AuDIO)(CIHR – Team Grant)
2023 - 2028
New Publications/International Talks/Student Awards
Here are the latest publications and international talks on childhood disability research from the Bloorview Research Institute from April to June 2023.
People on the Move
Dr. Sharon Smile’s recognized leadership has led to her appointment as the Division Head for Developmental Paediatrics in the Department of Paediatrics at the University of British Columbia and BC Children’s Hospital. Her appointment will commence in October.
Dr. Smile joined Holland Bloorview as a fellow in 2007 after competing her Bachelor of Medicine, Bachelor of Surgery, MBBS, at the University of West Indies, Mona Kingston, Jamaica. She was promoted to an associate professor at the University of Toronto in 2022 and recently was appointed as a clinical investigator at the BRI.
As a clinician investigator and developmental pediatrician, she has worked with autistic children and youth as well as caregivers to address mealtime challenges through the Autism Spectrum Disorder Feeding Education Hub online platform.. She has also authored peer-reviewed papers, articles and studies on topics focusing on health inequities, general pediatric practices in autism screening in Ontario and re-assessing a physician’s role in the assessment of feeding challenges in children with ASD among other critical areas.
Dr. Smile is an oustanding educator having received numerous awards from U of T’s Division of Developmental Paedtrics Faculty Teaching Awards over the past decade. She is a strong advocate in health equity and made an indelible impact as the Equity, Diversty and Inclusion lead for U of T’s Division of Developmental Paediatrics.
Congratulations, Dr. Smile!
BRI Resource – Research Communications Tool Kit
Attention researchers and trainees! Do you have a study that you want to recruit participants for through our hospital’s communication and social media channels? Interested in raising awareness of your new research study or project across the wider hospital community and beyond?
We have created a new Research Communications Tool Kit with tip sheets and online resources to help you with 1) study recruitment promotion efforts and 2) communicating your research to targeted audiences through Holland Bloorview’s digital channels.
The tool kit is available on our BRI Resource Portal now (search: ‘Research Communications’).
Contact Suelan Toye, Senior Research Communications Specialist (email@example.com), and she would be happy to walk your research team through the toolkit.
Holland Bloorview – BRI Branded PowerPoint Template
Please be reminded that you should use the updated Holland Bloorview – BRI branded PowerPoint template found on the online BRI resource portal or on HB Connect’s PowerPoint templates (check under the Forms and Resources tab).
Please delete the No Boundaries PowerPoint template from your files as that strategy has been replaced with Holland Bloorview’s new strategic plan: Transformative Care, Inclusive World: Holland Bloorview 2030.
Families at the Heart of Research
By Julia Kowal, coordinator, Family Engagement
Holland Bloorview has a long history of collaborating with clients and families, which has been instrumental to personalizing care, programs, and pathways. Similarly, the BRI has a history of and commitment to engaging families in research.
Through the Family Leadership Program – a formalized volunteer engagement and partnership program – parents, caregivers, and adult siblings (“Family Leaders”) use their lived experience caring for children and youth with disabilities and neurodevelopmental differences.
There are a number of ways Family Leaders can help to design, conduct, and guide the use of research done at the BRI. (Check out our Family Engagement in Research framework and user guide here as a starting point!)
The opening of the new research tower (the largest expansion in the BRI’s history) represents an expansion not just of research capacity, but also of opportunities for family engagement.
Before looking to the future, here is a look at some recent family engagement milestones at the BRI.
The Research Family Engagement Committee (RFEC) advises and supports the BRI on how to engage families in all parts of research. This June, we wrapped up an eventful meeting year which included:
- Giving input into and feedback on the in-development BRI strategic plan
- 8 consults from trainees and scientists seeking feedback on: prioritizing direction of future research, methods and protocol design, and dissemination and implementation plans
- Arranging opportunities for Family Leaders to “shadow” lab, project, and team meetings, to get a behind the scenes look at how research is done across the BRI
- Designing an interactive and educational presentation about family engagement in research, which members then co-facilitated in three workshop settings
- A hybrid meeting, which was the group’s first in-person gathering since March 2020!
RFEC meetings resume in September; new members and guests are welcome throughout the year (trainees especially!).
Outside of the RFEC, staff and trainees are able to embed family perspectives into their work by requesting Family Leaders to support a particular project element. Unsurprisingly, the pandemic greatly disrupted research activity, which in turn impacted the engagement of families. In 2020 and 2021, there were (respectively) 46% and 68% fewer requests for Family Leaders to be involved in research compared to 2019. Thankfully, as pandemic restrictions have eased, research activity has bounced back, and family engagement is on its way too! In 2022, there were 27% more requests for Family Leaders than in the two previous years. Based on the 2023 request numbers so far, it looks like that momentum is continuing to hold.
# of Requests
# of FLs matched
Total = 24
Total = 31
Engaging families in research is a journey, and the Family Leaders and I are looking forward to going on it with you!
For more information on family engagement in research, the RFEC, or requesting a Family Leader to support a current/upcoming project, please contact firstname.lastname@example.org.
Each year, over 100 trainees from universities across Canada come to the BRI to collaborate with some of the world’s top scientists in the field of pediatric disability research to advance scientific knowledge – and champion a world of possibilities for kids with disabilities and their families.
BRI Quarterly speaks to one research trainee, Josh Shore, who is a graduate student working with Dr. Shannon Scratch and Dr. Elaine Biddiss and their teams in the NOvEL and PEARL labs. Josh is currently in his first year of the PhD program at the University of Toronto’s Rehabilitation Sciences Institute within the Temerty Faculty of Medicine and the Collaborative Program in Neuroscience.
How did you get interested in your field of research?
While completing my undergraduate degree in kinesiology at Queen’s University, I was fortunate to work as a student trainer for the varsity men’s basketball team, providing preventative therapy and first aid coverage at games and practices. Over the course of my time with the team, several players sustained concussions and were sidelined indefinitely. I became really interested in this invisible injury and the lack of clarity about their timeline for returning to sport. Around that time, I was also introduced to concussion research through an undergraduate thesis project. To further my training in the field, I then decided to pursue graduate studies in rehabilitation science at U of T, a global leader in concussion research.
What drew you to Holland Bloorview’s Bloorview Research Institute?
I have always enjoyed working with kids, having spent several summers as a waterfront canoe/sailing staff and supervisor at summer camp. During my master’s degree I worked in a lab with close ties to Holland Bloorview and was able to visit on several occasions. Through my lab and other classmates who worked here, I began to be exposed to the amazing work being done at Holland Bloorview in childhood disability and rehabilitation. Within the field of concussion specifically, Holland Bloorview has a strong international reputation for its innovative clinical and research programs. Ultimately, I believe that the unique services across the hospital here at Holland Bloorview, such as the Family Engagement Committee, Evidence-to-Care team, and Commercialization Office, will benefit my training and help maximize the impact of our work.
What are you and your study team working on right now?
My PhD research is part of the R2Play project, which is a joint initiative between the NOvEL and PEARL labs to develop a new multidomain return-to-play assessment for youth with concussion. Evaluating concussion recovery and readiness to return to sport is challenging for clinicians, as there are no assessments that mimic the complex physical and cognitive demands of sport, so clinicians rely on simple tests like exercising on a treadmill and computerized cognitive testing to make difficult decisions. With the help of families and clinicians, our team created a tool called the R2Play system which uses technology to simulate sports by integrating physical, thinking, and emotional aspects in a single assessment. R2Play consists of a series of tablet “buttons” displaying numbers and letters that youth navigate to connect in alphanumerical order (i.e., 1-A-2-B…) through a series of levels with additional layered challenges.
We established initial proof-of-concept for R2Play in a preliminary study with clinicians who rated the system as easy to use, and healthy youth who reported that the assessment was sport-like, enjoyable, and appropriately challenging. The next step in our research is to test R2Play among youth who have already been cleared to return-to-play following a concussion.
After that, we plan to test R2Play in concussion clinics across Canada to assess cross-site feasibility (i.e., whether R2Play works at other sites) and evaluate the psychometric properties of the assessment including validity (whether the test measures what it’s supposed to) and reliability (whether the test produces consistent results). Another part of my PhD work, which has arisen directly from clinician feedback, is to explore the use of R2Play as a rehabilitation tool to identify individuals’ unique challenge areas in multidomain skill integration and guide personalized therapy planning.
How can your research unlock a new world of possibilities for children and youth with disabilities and their families?
With further testing and development, our hope is that R2Play will transform the return-to-play process by providing a multidomain concussion assessment that better simulates the demands of sport within a clinical setting. This may support safer and more efficient return to sport, ultimately reducing the risk for subsequent injury and enabling greater confidence in return-to-play decisions for youth, families, and clinicians.
As a rehabilitation tool, R2Play may also help inform personalized treatment planningfor youth with concussion. Since every brain injury is unique, the changes that occur post-concussion can differ between individuals and may only manifest in more complex tasks or environments. Through a more holistic and integrative assessment, R2Play could help clinicians better identify these subtle unique changes in neurological function and build personalized, integrative, multidomain therapy plans that support youth in a full and timely recovery from concussion.
What do you like to do in your spare time?
Outside of school and work, I enjoy cooking, reading, exploring new places, and spending time outdoors with family and friends. My favorite activities are hiking, running, cycling, paddling, skiing, snowshoeing, and playing any sport with a racquet and a ball.
It’s no secret that Holland Bloorview is full of everyday heroes. But how well do you know them? Let’s get to know Harry Sivasambu, a research manager at the Bloorview Research Institute’s Paediatrics, Rehabilitation, Orthotics, Prosthetics, Engineering, Locomotion, otherwise known as the PROPEL Lab.
What did you want to do/be when you grew up?
I've always been interested in how things worked and how to make things better, so engineering always felt like something I was born to do. But one of my hobbies as a child was making short films with my cousins, and there was a period of time where I hoped I could be a film director or producer.
What did you do before you came to Holland Bloorview?
I was at the University of Toronto completing my master's in biomedical engineering.
What is your role here?
In my role as Research Manager in the PROPEL Lab I have two major responsibilities. Primarily, I help oversee schedules and budgets of all ongoing research projects within the lab. I also lead the Digital Technology in Orthotics and Prosthetics project, a joint effort with Holland Bloorview's Orthotics and Prosthetics Department to use 3D scanning, computer modelling software, and 3D printing to make assistive devices for kids.
Biggest guilty pleasure?
I love being outdoors and active. Exploring the city's bike paths and trails is one of my favourite weekend activities.
Personal pet peeve?
Tech-based solutions with a poor user experience. Self-checkouts at the grocery store, customer service chatbots, "smart home" devices all have potential to be extremely valuable but are far too often error-prone and end up taking more time.
What do you like to do in your free time?
Skydiving near Wasaga Beach, Ontario, a highly recommended activity!
September 12, 2023 | BRI Research Rounds with Dr. Amy McPherson
Learn more at www.hollandbloorview.ca/BRIResearchRounds
November 14, 2023 | BRI Research Symposium
Learn more at https://hollandbloorview.ca/research-education/bloorview-research-insti…
Are you a member of the BRI community and are hosting an event? Please contact Suelan Toye at email@example.com to promote your upcoming event in the next issue of the BRI Quarterly.
About BRI Quarterly
BRI Quarterly is an online publication of the Bloorview Research Institute, housed within Holland Bloorview Kids Rehabilitation Hospital.
About Bloorview Research Institute
Holland Bloorview's research institute is housed at Holland Bloorview Kids Rehabilitation Hospital, a top 40 Canadian research hospital that is fully affiliated with the University of Toronto and serves over 8,000 families annually. The Bloorview Research Institute (BRI) is dedicated to creating meaningful and healthy future for children and youth with disabilities and developmental differences through ground-breaking research and innovations co-created in partnership with clients and their families. Learn more.
Share Your News
If you've recently presented at a conference, celebrated an award, grant or publication; or have a story idea, please contact Suelan Toye at firstname.lastname@example.org to share your news in the next BRI Quarterly!