Strengthening our Connections at the 2018 CHILD-BRIGHT Annual Meeting

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At CHILD-BRIGHT, we always look forward to in-person gatherings. As a pan-Canadian network, with members living across our very wide country, this is never easy, which is why we were especially thrilled to welcome 117 network members, including 20 patient-partners, at our 2018 CHILD-BRIGHT Annual Meeting in Montreal from December 5 to 7.

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Members of all our program and project teams, including patient-partners, research team leads, committee members, and central office staff came together to discuss our shared mandate, explore topics of interest related to patient-oriented research, and brainstorm ways to strengthen our connections among projects, programs, teams, and sites!

View photos of our event (photo credit: Julian Haber)

Programming Overview

Nancy Mason MacLellan, Manager of Major Initiatives at the Canadian Institutes of Health Research (CIHR), offered opening remarks alongside CHILD-BRIGHT Principal Investigator Lucy Lach and Citizen Engagement Director Frank Gavin. Each network research project team then presented updates about their work during our Meet the Investigators session. A series of sessions followed, tackling a wide variety of topics including recruitment, stakeholder engagement, equity in research, and sustainability. Consult our full event program here.

Networking & Learning From Each Other

A poster session took place on Day 1 and helped attendees and teams exchange ideas about ongoing work. A total of 22 posters were on display. Cross talks occurred on several topics of mutual strategic interest such as how to meaningfully involve patient-partners in the research work, and how to incorporate sex and gender into the projects. Read our full poster abstract booklet here.

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A BRIGHT Board & Networking Corner helped promote a collaborative atmosphere throughout the entire duration of the meeting. Attendees could post advice on this dedicated wall, share their thoughts, contribute comments, or ask questions. The networking section of the board also allowed members to not only share their direct contact information with other attendees, but also ‘pitch’ ways in which they could positively contribute to the work of other teams in attendance or solicit help to address some of their current team challenges.  

Policy Forum

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On December 7, policy makers from across Canada led discussions and engaged our multi-stakeholder group in a session that provided the audience with an overview of how policy is formulated and explored the gaps that exist between the worlds of research and policy. Three illustrative case studies underscored a number of key factors that should be accounted for when advocating for policy change. It is intended that these preliminary discussions set the stage moving forward as CHILD-BRIGHT mobilizes knowledge to action to help address issues related to the care of children and youth with neurodevelopmental disabilities.

Advancing our Patient-Oriented Work

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Committees and groups also convened, including parents of children with brain-based disabilities who met for a lunch to exchange their experiences with one another and share their insight with our Citizen Engagement Director, Frank Gavin, on how their involvement in the network could best advance and inform our patient-oriented work. Patients also helped steer the format of the meeting and its publications, including reshaping the way meeting speakers and participants were introduced in our programs; each contributed written personal testimonials and impact statements instead of traditional biographies, an approach that was proposed by a network patient-partner to better help highlight the expertise that lived experiences also bring. Download these here and let us know what you think of this alternate approach! 

Leveraging the Expertise of our Funders and Network Members

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We also had the honour of hosting some of our network funding partners including our Platinum funding partners from the Montreal Children’s Foundation & Opération Enfant Soleil, who graciously hosted a roundtable discussion titled How to keep donors and foundations engaged in research. Using a roundtable discussion format, meeting attendees also brainstormed ways to engage different populations in research including newcomers to Canada whose first language is not English, Indigenous People, parents living with income insecurity, and youth who use communication devices.

By coming together, we learned from each other and created new partnerships and collaborations, proving that a network can truly be greater than the sum of all its individual parts.

(Photo credit: Julian Haber)

Thank you to all our event attendees, many of whom traveled a great way to join us. We also wish to sincerely thank our network funding partners, without whom our work would not be possible.

Announcing the 2018 CHILD-BRIGHT Training Innovation Fund Winners

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We are pleased to announce the winners of the 2018 CHILD-BRIGHT Training Innovation Fund (TIF) competition, an initiative to facilitate the development of innovative training activities that will foster patient-oriented research training and mentoring within research projects focused on childhood brain-based developmental disabilities.

We received a number of strong proposals and following an in-depth review, the evaluation committee recommended two proposals for funding based on the impact that their proposed deliverables would have on increasing capacity for patient-oriented research within the CHILD-BRIGHT Network and beyond.

We congratulate the two following successful TIF winners:

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Project:

Learning Together: the use of simulation to enhance and enable authentic and meaningful research partnerships

Kathryn Parker

Kathryn Parker

Leads:
Kathryn Parker, Senior Director, Academic Affairs and Simulation Lead, Holland Bloorview & Nadia Tanel, Manager, Research Operations, Holland Bloorview

Funding amount granted
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$9,979

Project timeline:
Jan-Dec 2019

Nadia Tanel

Nadia Tanel

Project summary:
The proposed project aims to develop a suite of five simulation-based learning modules designed for multi-stakeholder research teams that include patients/families as partners. Adopting a co-learning approach, these modules will be designed to address complex challenges experienced by patients and scientists while engaging in patient-oriented research.

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Project
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Development of a partnership model for collaborative research with youth with disabilities

Gail Teachman

Gail Teachman

Lead:
Gail Teachman, Assistant Professor, Western University

Funding amount granted:
$10,000

Project timeline:
Jan 2019-Jan 2021

Project summary:
The project aims to pilot a model for meaningfully engaging youth with diverse disabilities as collaborators in an integrated knowledge translation (iKT) research project. This project will actively engage youth collaborators as well as other stakeholder groups in the creation of training modules that train health care providers to approach childhood disability as an interaction between physiological and social determinants of disability.

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Congratulations!

Introducing the CHILD-BRIGHT National Youth Advisory Panel

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It has always been our intention to put youth at the center of our work, and we are thrilled to announce that this structure is now in place at CHILD-BRIGHT!  

Dolly Menna-Dack

Dolly Menna-Dack

Last year, we formed a Youth Engagement Steering Committee and mandated this committee to help us establish our youth panel as well as its mandate, terms, priorities, and membership.

Dolly Menna-Dack, Clinical Bioethicist & Youth Engagement Strategy Lead at Holland Bloorview Kids Rehabilitation Hospital chaired this committee. This steering committee also included representatives from multiple provinces, members with lived experience in brain-based developmental disabilities, and experts in the field of paediatric engagement, ethics, and science.

“It has been a pleasure for me to lead this exciting initiative, and today, I’m happy to help introduce this new panel, which will be called the CHILD-BRIGHT National Youth Advisory Panel (NYAP),” says Dolly Menna-Dack.

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“CHILD-BRIGHT is committed to the ideals of patient-oriented research, firmly believing that research designed, conducted, reviewed, and disseminated alongside patient-partners will increase the impact of that research. CHILD-BRIGHT has also, in numerous ways, demonstrated its commitment to patient partnership. For example, it is guided by its Citizen Engagement Council, and recently put in place a Parent Mentor. These innovative ideas have allowed for pan-Canadian involvement of families, scientists, and adults living with brain-based developmental disabilities to come together and contribute to the CHILD-BRIGHT Network,” adds Dolly Menna-Dack.
 
The NYAP will further support CHILD-BRIGHT by providing the youth lived experience lens to the work being done by the network. Meeting on a regular basis, youth advisors with brain-based developmental disabilities from across the country will review research protocols, recruitment strategies, communication plans, and dissemination activities.

And without much ado, please click below to meet each of our new National Youth Advisory Panel (NYAP) members, and click here to read about their first in-person gathering and training session!

MATHIAS

MAYA

MIKE

HANS

LOGAN

 

Our First National Youth Advisory Panel Gathering

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This past summer, on June 23 and 24, 2018, Mathias Castaldo, Maya Pajevic, Hans Dupuis, and Logan Wong, four members of our new National Youth Advisory Panel (NYAP) traveled from Montreal, Toronto, and Calgary to attend their first training event together in Toronto. 

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This inaugural training session was a combined effort by CHILD-BRIGHT and Holland Bloorview Kids Rehabilitation Hospital, put in place to help introduce the new youth panel members to their new roles within our patient-oriented research network, in which their voices as youth with lived experience with brain-based developmental disabilities will be key!

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The session was hosted by Dolly Menna-Dack, Chair of CHILD-BRIGHT’s Youth Engagement Steering Committee, and was held at Holland Bloorview, where Dolly is the lead for the hospital’s Youth Engagement Strategy. 

Day 1 began with a welcome breakfast, introductions, and icebreakers and then quickly launched into the rest of the day – there was lots of learning to do! Over the course of several hours, our youth members learned about key themes in research such as communication methods, core concepts in ethics, and common issues in pediatric ethics. The day ended at Holland Bloorview’s Youth Advisory Council’s end-of-year party.

Day 2 focussed on CHILD-BRIGHT's Introduction to health research training module, followed by a tour of Holland Bloorview. Frank Gavin, the Chair of the Citizen Engagement Council at CHILD-BRIGHT joined the group at lunch. After that, the youth participated in an education session on reviewing research, as well as a workshop on understanding implicit biases and why these are important to keep in mind as advisors.

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“It was an action-packed couple of days in Toronto, but it proved to be quite an inaugural event for the NYAP! Not only was the panel given a valuable introduction to their new roles and to the world of research, but it was also a wonderful opportunity to come together as members of the CHILD-BRIGHT community,” says Dolly Menna-Dack.

“It was great to put names to faces of the other members of the network, and also to get introduced in a very positive way to the realm of research, what research looks like, what research is, and what our role as members of the CHILD-BRIGHT Network will be to improve the lives and experience of those living with a brain-based disability,” says NYAP member Maya Pajevic.  

Thank you to Dolly Menna-Dack and her team at Holland Bloorview, and also to the wonderful members of both the CHILD-BRIGHT and Holland Bloorview youth committees for such a successful event!

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Meet Hans Dupuis, National Youth Advisory Panel Member

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We are thrilled to introduce the members of our new National Youth Advisory Panel. To read more about this new panel, and its mandate, click here.

Hans Dupuis, 23

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What are you studying and/or what are your professional ambitions?

I completed high school in 2011 and went to CEGEP until 2016, but didn’t complete it. I’ve had several small jobs but my goal was to get a job as an librarian’s assistant in a local Montreal library. I signed up to Action Main-d’œuvre, an organisation that helps people ‘with differences’ find employment and with their help, I got a position at Air Canada. I’ve been working there since 2017.

I’ve also been a mentor at Action Main-d’œuvre Worktopia workshops, a program that helps people with autism get ready for the workforce.

 

What are your passions, interests, and hobbies?

In my free time, I read a lot of manga and graphic novels. I also play video games on the computer with a friend. I like playing Dungeon and Dragon with a group of friends, and also enjoy live-action role playing (LARP). I enjoy going to the movies with my girlfriend. I like doing Cosplay at conventions. I also take medieval fencing lessons and have done Kendo in the past, a type of Japanese fencing.

I love history and because I studied it in school, I’m quite knowledgeable in this field. I have a very good memory.

I also love learning foreign language; I studied Spanish and German in CEGEP, and am learning some Russian at home. I strive to one day add Japanese to this listing since Japan fascinates me. I dream of going there one day!

 

Can you tell us about your experience with brain-based developmental disabilities?

I have pervasive developmental disorder (mild Asperger syndrome), now called Autism Spectrum Disorder, with a mild attention deficit. During my school years, I’ve always received help, from grade school to CEGEP.

 

What are your hopes for the National Youth Advisory Panel?

I don’t have specific ambitions but I want to help others with brain-based disabilities or autism, in any way I can, and hope to learn from this team along the way also.

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Meet the other youth advisory panel members:

MATHIAS

MAYA

MIKE

LOGAN

Read about our first in-person gathering and training session here.