Announcing the 2022 Training Innovation Fund winners!

We are pleased to announce the winners of the 2022 CHILD-BRIGHT Training Innovation Fund (TIF) competition!

The TIF facilitates innovative training initiatives that complement ongoing patient-oriented research (POR) activities focused on childhood brain-based developmental disabilities. For the 2022 TIF competition, we invited submissions related to the development of innovative tools and resources that develop capacity in the areas of knowledge mobilization, implementation science, or equity, diversity, inclusion, decolonization and Indigenization.

Congratulations to the three winning teams:

Implementation Science and Knowledge Mobilization bite-sized videos for beginners

Lead:

Carrie Costello, Parent Liaison, CHILD-BRIGHT Network, Patient Engagement Coordinator, Children’s Hospital Research Institute of Manitoba and University of Manitoba

Team members:

• Onalee Garcia, Patient-Partner, Can-SOLVE CKD Network, youth with type 2 diabetes, Project iCARE

• Shayna Quoquat, Patient-Partner, Can-SOLVE CKD Network, youth with type 2 diabetes, Project iCARE

• Logan Wong, Patient-Partner, CHILD-BRIGHT National Youth Advisory Panel

• Gillian Backlin, Patient-Partner, CHILD-BRIGHT National Youth Advisory Panel

• Hans Dupuis, Patient-Partner, CHILD-BRIGHT National Youth Advisory Panel
  

Funding amount granted:

$10,000

Project timeline:

Sept 1, 2022 - August 31, 2023

Project summary:

The project team is co-creating a series of bite-sized videos in partnership with youth from CHILD-BRIGHT’s National Youth Advisory Panel (NYAP) and the Can-SOLVE CKD Network. These videos will enable researchers and patient-partners to have a shared understanding of the basic concepts of knowledge mobilization and implementation science with the aim of promoting more meaningful engagement as projects within CHILD-BRIGHT pivot towards Phase 2 priorities.

CEE you!: Critical Ethical Engagement of YOUth in patient-oriented research

Sakiko Yamaguchi

Keiko Shikako

Corinne Lalonde

Shafniya Kanagaratnam

Mathias Castaldo

Linda Nguyen

Lead:

Sakiko Yamaguchi, Postdoctoral Fellow, CHILD-BRIGHT Knowledge Mobilization Program, McGill University

Team members:

• Keiko Shikako, Researcher, McGill University, Co-Lead, CHILD-BRIGHT Knowledge Mobilization Program

• Corinne Lalonde, Coordinator, CHILD-BRIGHT Citizen Engagement Program and National Youth Advisory Panel

• Mathias Castaldo, Patient-Partner, CHILD-BRIGHT National Youth Advisory Panel

• Shafniya Kanagaratnam, Patient-Partner, CHILD-BRIGHT National Youth Advisory Panel

• Linda Nguyen, Postdoctoral Fellow, McGill University

Funding amount granted:

$10,000

Project timeline:

September 1, 2022 – August 31, 2023

Project summary:

This project team is co-creating a series of training modules with CHILD-BRIGHT’s National Youth Advisory Panel (NYAP). By exploring the perspectives and experiences of youth, these modules will create a better understanding of youth participation in patient-oriented research and enhance researchers' ethical engagement of youth with disabilities as partners.

Working with each other, our families and our communities: A guideline for partnered research initiatives that support immigrant and refugee families of children who are neurodiverse

Rosslynn Zulla

Andrea MacLeod

Yvonne Chiu

Lucero Vargas

Tsedale Aregawi

Julie Zhu

Atiya Syeda

Rispah Tremblay

Wubetu Biabeyin

Abdullah Ahmed

Danielle Schulte

Leads:

• Rosslynn Zulla, Postdoctoral Associate, University of Calgary, Faculty of Social Work

• Andrea MacLeod, Professor - Dept. Communication Sciences & Disorders, Faculty of Rehabilitation Medicine, Associate Dean - Faculty of Graduate Studies and Research, University of Alberta

Team members:

• Yvonne Chiu, Executive Director, Multicultural Health Brokers Cooperative        

• Lucero Vargas, Bilingual Speech Language Pathologist, Multicultural Health Brokers Cooperative            

• Tsedale Aregawi, Health Broker, Multicultural Health Brokers Co-Operative, Parent of a child with a disability, Eritrean Society Autism Edmonton

• Julie Zhu, Health Broker, Multicultural Health Brokers Cooperative, Chinese community with children with disabilities        

• Atiya Syeda, Registered social worker and South Asian broker, Multicultural Health Brokers Cooperative

• Rispah Tremblay, Senior Manager, Settlement Services, Edmonton Mennonite Centre for Newcomers

• Wubetu Biabeyin, Research and Evaluation Coordinator, Edmonton Mennonite Centre for Newcomers

• Abdullah Ahmed, Program Coordinator – Complex Cases (Youth and Children), Enhanced Settlement Workers in Schools Program, Edmonton Mennonite Centre for Newcomers  

• Danielle Schulte, Program Supervisor, Immigration and Settlement Service, Catholic Social Services

Funding amount granted:

$9,960

Project timeline:

September 1, 2022 - August 31, 2023

Project summary:

This project team is creating a written and video guideline that will enhance the capacity of patient-oriented researchers who wish to work with immigrant and refugee families of neurodiverse children. This project will also help enhance patient-oriented researchers’ competency in broadening the impact of research findings in immigrant and refugee communities.

We received many high-quality submissions this round and thank all those who submitted a proposal!

Azrieli CHILD-BRIGHT Fellowship Program

In collaboration with the Azrieli Foundation, CHILD-BRIGHT is looking to recruit a cohort of postdoctoral researchers to work on our implementation science research projects, and to help programs mobilize knowledge to action in support of children with brain-based developmental disabilities (BDD) and their families.

We are looking to fill 6 or more postdoctoral positions for up to two years. Ideally, qualified applicants will have strengths in implementation science research and expertise in disseminating research knowledge and supporting the uptake of evidence into practice.

Further, applicants should have a strong interest in patient-oriented research, a passion for supporting children with BDD and their families, as well as practically applying the core principles of equity, diversity, inclusion, decolonization, and Indigenization (EDI-DI) throughout health research.

Applications are encouraged by October 17, 2022. However, the application process will remain open until all positions are filled. Applications will be reviewed and assessed on a rolling basis as they are submitted.

Do not hesitate to contact pierre.zwiegers@child-bright.ca for further details as necessary, and please take a moment to share this opportunity within your networks to help us find these candidates.

Getting to know our Phase 2 Programs: Training & Capacity Building

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 Training & Capacity Building (T&CB) Program will continue developing capacity in patient-oriented research, with new training opportunities that will emphasize topics related to understanding and applying implementation science (IS) and knowledge mobilization (KM) methods and equity, diversity, inclusion, decolonization and Indigenization (EDI-DI) principles as they intersect with patient-oriented research. To lead these efforts, Phase 1 Scientific Co-Director and Training Program Lead Daniel Goldowitz will be joined by Celia Laur as T&CB Co-Lead. 

Daniel Goldowitz 
CHILD-BRIGHT Scientific Co-Director and Training & Capacity Building Program Co-Lead  
Professor, Department of Medical Genetics 
Senior Scientist, Centre for Molecular Medicine and Therapeutics               
BC Children’s Hospital Research Institute (BCCHR) 
University of British Columbia

Celia Laur 
CHILD-BRIGHT Training & Capacity Building Program Co-Lead                                
Scientific Lead, Office of Spread and Scale  
Women’s College Hospital Institute for Health System Solutions and Virtual Care (WIHV)  
Assistant Professor (Status), Institute for Health Policy, Management, and Evaluation; University of Toronto 

We sat down with Dan and Celia to learn more about the T&CB Program’s plans for Phase 2:  

WHAT IS YOUR PROGRAM’S MANDATE? 

Daniel Goldowitz: The role of the T&CB Program is to design and host opportunities like studentships, fellowships, and mentorships, to meet IS, KM, and EDI-DI training gaps within the network. 

In Phase 1, the Training Program made great strides in training our members in patient-oriented research (POR) and building POR capacity. We did so by hosting webinars and workshops exploring the practical application of POR, offering patient-oriented summer studentships and graduate fellowships, and funding innovative POR approaches using our special award offerings, such as the Training Innovation Fund and Collaborative Mentorship Grant. Externally, we co-created a National Training Entity, which is now supported by CIHR. We also worked with BC and Ontario SPOR SUPPORT Units to create self-paced training modules in pediatric POR. 

Celia Laur: Building on what Dan said, we have three main goals for Phase 2. Firstly, we’ll develop capacity throughout our network so our members can apply the basic concepts of equity-informed implementation science to POR findings to help improve care and outcomes for children with brain-based developmental disabilities and their families. Secondly, we will develop capacity for our members to embed tenets of EDI-DI throughout POR projects to ensure that knowledge mobilization is informed by, and maximally benefits our diverse patient population. Finally, we will develop mentorship initiatives that train our research project teams to develop sustainability plans and implementation strategies to move research findings into practice. 

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

CL: We will create learning and funding opportunities to enhance our approaches to IS and KM and increase our capacity in EDI-DI. These will include webinars, self-paced learning modalities, scholarships, fellowships, mentoring, and coaching strategies. They will be tailored to relevant audiences and adapted to different competency levels. We will also leverage existing resources and collaborate with other organizations to develop training outputs that can be widely shared and disseminated across all SPOR entities. 

HOW WILL YOUR PROGRAM MEANINGFULLY ENGAGE PATIENT-PARTNERS? 

DG: The effort of the T&CB Program is guided by a committee comprised of multiple stakeholders who provide a diversity of perspectives. Critical to our approach is listening to the voices of our committed patient-partners who serve on this committee and are integral to developing all the exciting training and funding opportunities that we offer. Looking ahead into the new phase of the network, we are excited to not only cultivate a strong collaboration with the EDI-DI team, but to welcome new patient-partners to the T&CB Program committee to ensure that our efforts better serve historically underrepresented groups.  

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

CL: I’m an early career investigator, implementation scientist and health services researcher, so was very pleased to have the opportunity to work with this national network at a time when they are increasing their focus on putting knowledge into practice. Joining the T&CB Program aligns with my personal interests in capacity building and implementation science and my role with the Office of Spread and Scale at Women’s College Hospital. It also provides me the opportunity, in my own small way, to support children with brain-based developmental disabilities and their families. 

DAN, WHAT LEARNINGS FROM PHASE 1 WILL YOU BE LEVERAGING IN PHASE 2? 

DG: In Phase 1, I think we did an excellent job in training our students, fellows, family members and researchers. In Phase 2, we would like to build on the lessons learned and successes and then move our efforts to the larger community. 

WHY IS IT IMPORTANT TO FOCUS ON TRAINING & CAPACITY BUILDING IN PATIENT-ORIENTED RESEARCH NOW? 

DG: Patient-oriented research is still a very new initiative in the health care system, so continued efforts in this direction will serve to have a larger number of practitioners. With Phase 2, we are introducing IS, KM, and EDI-DI. These may be new concepts to many of our members and to the larger community, so it is important to help folks be aware of what these concepts mean, and how they support our efforts to support kids with neurodevelopmental disabilities.   

CL: To add to Dan’s point, each of these areas are interconnected and complement each other. We want to encourage people to learn about these areas together and see what make the most sense for each team to have the widest impact, particularly for embedding the principles of EDI-DI through the network.  

WHAT ARE YOU MOST EXCITED TO SEE IN PHASE 2?  

DG: It is like a new journey and therein lies the excitement, like we are on a sailing vessel that we have seen to be seaworthy. We’re now preparing the ship for the continuation of our voyage to exciting new lands. 

CL: To continue Dan’s analogy, I’m excited to be a new passenger on this ship! I’m looking forward to meeting people throughout the network and finding ways for us to all learn together.  

Thank you, Dan and Celia, for this insight into the Training & Capacity Building Program!  

If you have any questions about the plan for the T&CB Program in Phase 2, reach out to Program Coordinator Pierre Zwiegers. 

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 EDI-DI Program 

Get to know our Citizen Engagement (CE) Program 

2022 Training Innovation Fund

CHILD-BRIGHT is proud to launch its 2022 Training Innovation Fund!

The Training Innovation Fund will provide a maximum of $10,000 in funds to facilitate innovative training initiatives that will complement ongoing Patient-Oriented Research activities that focus on childhood brain-based developmental disabilities.

With this opportunity we intend to support the development of innovative tools and resources that develop capacity in the areas of Knowledge Mobilization, Implementation Science, or Equity, Diversity, Inclusion, Decolonization & Indigenization.

Applications are due July 15, 2022

Visit our grant competition page for details, eligibility requirements, and application procedure. Good luck!

CHILD-BRIGHT’s 2021 summer students reflect on their research experiences with the network

Every year, CHILD-BRIGHT is proud to help train a new cohort of students in patient-oriented research (POR) by supporting our project and program teams as they hire students for the summer. In 2021, we welcomed 14 students to the 2021 CHILD-BRIGHT Summer Studentship Program.

Below, our summer students reflect on their experiences working with many of our research project teams, learning about the principal tenets of patient-oriented research through our summer studentship training program, and trying their hand at “translating” research articles into lay-friendly summaries, which will be made available in our upcoming KT Library.

Here’s what they had to say:

PARENT-EPIQ

“Being a CHILD-BRIGHT summer student totally changed my understanding of research!”

— Amarpreet

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SPORT

“I am coming out of this experience inspired by the incredible work being done and all the possibilities open to me to make an impact.”

— Rachel

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PIUO 

“As a librarian, I found it useful to gain firsthand knowledge of patient-oriented research and the research process. I see these experiences being tremendously helpful in the future as I continue to work with, and provide support to, researchers.”

— Matthew

“Thank you to the CHILD-BRIGHT Network and PIUO team for teaching me the importance and application of patient-oriented research.”

— Isobel

“Through engaging webinars, group activities, and discussion posts, I learned the benefits and importance of involving patients as partners in research studies.”

— Deena

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STRONGEST FAMILIES NEURODEVELOPMENTAL PROGRAM

“Even though this was my second time participating in the CHILD-BRIGHT summer studentship program, I learned many new things about patient-oriented research!”

— Ting

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JOOAY

“Seeing the material I was learning about in [the summer studentship training modules] being applied in real time made the experience all the more valuable and memorable.”

— Claire

“This experience has helped me become acquainted with the research community and lab culture, something that I had very little knowledge of previously. I hope to continue trying to bring awareness to accessibility for all abilities in all areas of life, whether it be in future research, work, or everyday life.”

— Antonina

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MEGA TEAM

“My summer studentship experience of working on a CHILD-BRIGHT research project was nothing short of extraordinary!”

— Shi Ping

“I learned a lot about how critical it is to communicate complex and challenging scientific findings in lay terms to attract public attention.”

— Eisha

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CCENT

“I became more familiar with the tenets of patient-oriented research and the benefits that such research can have on patient outcomes and experiences.”

— Laura

“Not only did this experience firmly reinforce my passion for patient- and family-centered research, but it also taught me how to engage and collaborate with patients at all points of the research process.”

— Clara

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“This summer, I learned that to have “good” patient engagement in research, it is vital to keep open lines of communication between the research team and the patients, families, and caregivers involved.”

— Claire

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This summer, CHILD-BRIGHT also welcomed student Chloe Janse van Rensburg. Chloe participated in the studentship training sessions while working with CHILD-BRIGHT Parent Peer Mentor Carrie Costello and PIUO Family Liaison Laesa Kim on their project, which was funded by a CHILD-BRIGHT Collaborative Mentorship Grant. Their project examines the benefits and drawbacks of asking parents to use their personal networks (such as social media, email, and other connections) to recruit for research.

Announcing the recipients of the 2021 CHILD-BRIGHT Graduate Student Fellowship in Patient-Oriented Research

CHILD-BRIGHT is delighted to announce the recipients of the 2021 CHILD-BRIGHT Graduate Student Fellowship in Patient-Oriented Research.

The fellowship is designed to enhance the training experience of graduate students and postdoctoral fellows who are engaged in patient-oriented research (POR) relating to brain-based developmental disabilities in children. It also aims to increase patient engagement throughout the process by enriching current POR practices or augmenting the research project.

POR is integral to evidence-informed health care and CHILD-BRIGHT is proud to support the POR projects of the following six recipients:

1. Adapting in-home data collection for families of children with severe neurological impairment 

Recipient: Katelynn Boerner 

Project Summary: As a co-investigator of the Living Lab at Home (LLAH) research initiative, led by PIUO Co-Principal Investigator Tim Oberlander, Katelynn has been helping develop a platform for researchers to gather data about potential markers for patient distress at home. Katelynn is now seeking to understand how to adapt this platform to better serve families of adolescents with severe neurological impairment (SNI). 

With this project, Katelynn aims to answer four research questions: (1) How do families of adolescents with SNI feel about in-home data collection, and will they engage in it? (2) What adaptations would be required to make this type of data collection feasible for, and reduce burden on, families? (3) What are these families’ research priorities? (4) Can the information gathered through this project be adapted into a platform for conducting community-based research for families across the developmental spectrum? 

2. HEIGHTEN: Home-based Early Intensive Hemiparesis Therapy: Engaging Nurture

Recipient: Alicia Hilderley

Project Summary: Early intervention is increasingly recognized as critical for optimizing the long-term health and wellbeing of infants and toddlers with hemiplegic cerebral palsy (HCP), or CP affecting one side of the body. However, questions remain about the ideal format. Coaching caregivers to deliver upper limb therapy at home seems promising. This format could allow for a higher therapy dose at lower cost, make therapy more easily accessible for families, and encourage lasting improvements in hand and arm function.

With this project, working under the supervision of SPORT Principal Investigator Adam Kirton, Alicia aims to answer two research questions: (1) Is a home-based upper limb therapy program for infants and toddlers with HCP feasible for, and acceptable to, caregivers and therapists? (2) Is this program effective in achieving functional goals and in improving arm/hand function for infants and toddlers with HCP?

3. The Examination Under Anesthesia (EUA) Project: Optimizing care and minimizing trauma in children and youth with severe neurodevelopmental disorders and behavioural complexity requiring sedation

Recipient: Aaron Ooi

Project Summary: Parents of children and youth with brain-based developmental disabilities and behavioural complexity have often voiced their frustration with the difficulties in coordinating care between health services for their child. Such difficulties in coordination often results in inequitable access to medical examinations and investigations that frequently require anesthesia.  The process for accessing such procedures is also frequently traumatic for patients, caregivers, families and staff, as even for simple procedures such as blood tests, multiple adults can often be required to restrain the child.

With this project, and working under the supervision of PIUO project Co-Investigator Anamaria Richardson, Aaron aims to record accounts of the lived parental experiences in these situations and amplify their narratives. It is hoped that these narratives will subsequently inform decision makers at a management and operations level in planning for, and improving, current sedation services for these patients.

4. Enhancing access and engagement in pediatric telerehabilitation for children with neurodevelopmental disabilities and their families

Recipient: Meaghan Reitzel

Project Summary: COVID-19 restrictions have limited access to in-person children’s rehabilitation services. Service providers have pivoted to supporting families using telerehabilitation platforms to provide therapeutic services remotely. Although convenient, using these platforms can continue to present barriers for children and families needing to access crucial services.

With this project, Meaghan aims to co-design and evaluate innovative solutions that will enhance the accessibility of, and engagement in, telerehabilitation for children with brain-based developmental disabilities. In collaboration with patient-partners (parents of a child with a  brain-based developmental disability) and a knowledge user partner (KidsAbility), Meaghan will: (1) examine the patterns of missed telerehabilitation visits; (2) develop and implement innovative solutions to enhance access and engagement in telerehabilitation; (3) evaluate the implementation of solutions at a Children's Treatment Centre in Ontario.

5. Codesigning and evaluating a workplace disability disclosure decision-aid and planning tool for autistic youth and young adults to enhance self-determination and decision-making skills

Recipient: Vanessa Tomas

Project Summary: Canadian youth and young adults on the autism spectrum face underemployment (i.e., lower pay/hours, tasks that are below their intellectual potential) and shockingly low employment rates despite their willingness to work. Disclosing their autism and/or related needs at work may improve employment outcomes, but the decision-making process around whether and how to disclose can be complex. As part of her doctoral research, Vanessa worked to better understand the workplace disclosure experiences of Canadian autistic youth and adults. Her findings revealed the need for a disclosure decision-aid and planning tool that is sensitive to intersectional identities and cultivates decision-making and self-determination skills, which she now aims to co-design and evaluate in collaboration with four autistic youth and young adult partners.

With this project, Vanessa aims to answer the research question: What is the usability, feasibility, and perceived impact of such a disclosure decision-aid and planning tool for autistic youth and young adults when it comes to enhancing decision-making and self-determination skills?

6. Improving Decision Making in the Neonatal Intensive Care Unit – a Quality Improvement Initiative 

Recipient: Maya Dahan

Project Summary:  Maya is working on a tool to help medical teams working in the neonatal intensive care unit (NICU) collect, document, and transfer the essential information that clinicians need to know to best support newborn babies and families. This tool will standardize information-gathering and develop a process for its implementation based on parental and medical team input. It is particularly important for this information to be well documented and transferred in the NICU, because most infants in the NICU are hospitalized for a prolonged period of time and are cared for by different care providers. Without standardization, there is significant opportunity for errors and omissions that can negatively impact the family’s partnership with the medical team.  

With this project, working under the supervision of CCENT Principal Investigator Paige Church, Maya aims to enhance communication between families of infants and the NICU staff about the family’s context, values, and goals and how they affect their decision-making process. In so doing, she hopes to shed light on how an interdisciplinary team can improve their communication with families around their context, values, fears, and goals while creating a framework for improvement. 

CHILD-BRIGHT Network Patient-Oriented research Discussions

CHILD-BRIGHT is proud to launch its inaugural Patient-Oriented research Discussions (PODs) series! This initiative aims to enhance the exchange of ideas between all stakeholders within our network. We will meet regularly to discuss and explore content related to patient engagement in research, including interesting projects, resources, pieces of media, podcasts, webinars, research articles, or any other materials that relate to patient-oriented research. Each session will be hosted by a presenter who will pick the topic and resource(s) for discussion, and will consist of a 60-minute exploration of the resource/topic as well as an optional 30-minute networking opportunity.

Our current scheduled sessions include:

To join, please complete the registration form below and sign up for your choice of sessions.

We look forward to exploring these topics with you!

Welcome to the 2021 CHILD-BRIGHT Summer Studentship Cohort!

We are thrilled to welcome 14 new students to our 2021 CHILD-BRIGHT Summer Studentship Program!

Every year, CHILD-BRIGHT helps train a new cohort of students in patient-oriented research (POR) by supporting our project and program teams as they hire students for the summer. For the 2021 offering, we earmarked over $50,000 to support these students, who will be working with eight of our research project teams.

Meet this summer’s cohort:

PARENT-EPIQ

Amarpreet will be cleaning and analyzing data collected from Parent-EPIQ’s questionnaire, which was sent to parents of children born very preterm and other key stakeholders to help answer the question: “What early childhood outcome measures are meaningful to parents of children born very preterm?” With assistance from the research team and statistician, Amarpreet will then analyze the results and write an abstract.

SPORT

As a member of the Cerebral Palsy (CP) Discovery Lab, Rachel will focus on data collected from previous intensive two-week camps investigating the use of Transcranial Direct Current Stimulation (tDCS) paired with constraint therapy in children with Hemiplegic CP to improve hand function. She will be involved in data cleaning and statistical analysis in order to contribute to a peer-reviewed manuscript.

PIUO 

Deena and Isobel will focus on a substudy within PIUO to describe the characteristics of children with neurological impairment presenting with neuroirritability requiring hospitalization at the Hospital for Sick Children and the Children’s Hospital of Eastern Ontario, respectively, and to describe the clinical care they receive. Matthew will plan, conduct and complete a literature search providing evidence for the prevalence of patient-partners in pediatric health literature, specifically as co-authors with accreditation for research publications.

Strongest Families ND

Ting will help establish a Knowledge Translation (KT) plan and study for the survey results of the Life Beyond Trauma research study. At the end of the study, Ting will analyze the data of the KT study and will write a manuscript for publication in an academic journal. 

Jooay

This summer, Sarah, Claire, and Antonina will be responsible for data collection and information extraction to be included in the Jooay App, as well as data entry and data analysis using app analytics. They will also support a number of key knowledge translation activities related to the Jooay App.

Mega Team

Shi Ping and Eisha will learn how to conduct research study visits, gather consent from participants, as well as interact with study participants and families. They will also learn about methods and processes of data collection and the importance of incorporating patient-partners in the research study.

CCENT

Laura will complete a chart review of NICU admissions at Mount Sinai for one calendar year, to identify medical indicators of high-risk infants. She will conduct data analysis to identify potential early signs—from the child’s time in the NICU—that could help predict if a child will need to be referred to the complex care program, and if so, to help identify the opportune time for when these referrals should be made. She will summarize the findings in a manuscript. Meanwhile, Clara will focus on data analysis and visualization as well as assist with a meta-analysis of CCENT’s 16 measures administered over an 18-month period to capture outcomes such as stress, mental health, and experience of care delivery.

ReadyOrNot

Claire will conduct a review to identify key issues and policies that need to be improved  relative to the health care transition of youth from the pediatric to adult care settings. She will also work with the project team’s Patient and Family Advisory Group (PFAC) to develop skills in patient-oriented research. She will take on a leadership role within this group, where she will co-facilitate meetings, prepare materials, consolidate discussion questions, and incorporate feedback from the PFAC into the team’s work.

As part of the program, the summer students start by completing the Patient-Oriented Research Curriculum In Child Health (PORCCH), a series of free online training modules, co-funded by CHILD-BRIGHT, to learn about the basics of POR. PORCCH is designed to build knowledge and skills for authentic patient-oriented research in child health.

The students are then engaged in a mix of live and asynchronous learning sessions, with a new resource or activity introduced every week. CHILD-BRIGHT patient-partner Kent Cadogan Loftsgard will be returning this year to facilitate a webinar in which he will share some of his insights about effective patient engagement in the research process.

This year, the students will also be working in groups to write a plain-language summary of a research article published by a CHILD-BRIGHT researcher. Not only will the students be able to practice their scientific communication skills, but the end result will be lay-friendly article summaries that will be published in CHILD-BRIGHT’s forthcoming KT Library, where they will be available to researchers, policy makers, patients, and families.

Stay tuned to read these lay summaries at the end of the summer!  In the meantime, to see more of our CHILD-BRIGHT youth in action, watch the recording of our latest webinar:  Diversity, Accessibility, & Accommodation Considerations in Patient-Oriented Research with Youth.

Apply now for the 2021 CHILD-BRIGHT Graduate Fellowship in Patient-Oriented Research!

We are excited to launch the 2021 competition for the CHILD-BRIGHT Graduate Fellowship in Patient-Oriented Research!

The competition aims to enhance the training experience of graduate students and postdoctoral fellows working on patient-oriented research (POR) projects focused on brain-based developmental disabilities in children. The funding support is meant to enrich current POR practices or help increase patient engagement throughout the research project.

For 2021-22 a total of $50,000 in funds are available (with an expected maximum of $10,000 awarded to each successful applicant) for a project that is to be completed within 18-24 months.

Applications are due by September 5, 2021

Wondering what kind of projects are eligible for this award? Read about the recipients of the 2020 Graduate Fellowship Awards and the projects they’re working on!

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

2021 Virtual Symposium Discussion: Brainstorming Together on How to Support the Continued Funding of Child Health Research in Canada

How can the CHILD-BRIGHT community rally to support the continued funding of critical child health research in the realm of neurodevelopmental disability? As part of our recent 2021 CHILD-BRIGHT Virtual Symposium, Katie Griffiths, a personal support worker who runs the Patchwork Half Heart community and a parent-partner in our MATCH study, along with Patrick D. Lafferty, who has extensive experience providing strategic planning to organizations, co-facilitated a discussion aimed at brainstorming answers to this question.

“Through my journey I have learned how little research funding there is for children’s health,” Katie Griffiths observed. The time for uptake of this research is also lengthy. On average it takes nearly two decades before a scientific discovery can be adopted into clinical practice. However, as illustrated by the rapid development of the COVID-19 vaccines over the last year, when priorities align and sufficient resources at a local and international level are made available, the research community can address complex problems much more quickly, including ensuring the continued funding of important child health research.

“The opportunities are there,” Patrick Lafferty noted. “The question is how to get the right people in the room to brainstorm […] a model that can be taken to all sorts of constituencies.”

During the symposium brainstorming session, 20 participants raised a variety of topics, including the importance of further enhancing public involvement in the research process, and more broadly publicizing successes to generate awareness. In addition, the participants discussed learning from past successful social media campaigns (such as the ALS Ice Bucket Challenge) to leverage non-traditional funding opportunities and made the case for funding a national diagnostic strategy that would yield financial returns and support further innovative research initiatives. Key takeaways included a call to action to consider unique funding strategies and subsequently engaging committed stakeholders who would move the effort forward.

CHILD-BRIGHT has taken note of these takeaways and is now evaluating the issues raised for future brainstorming sessions, events, and research priorities.

The 2021 report, Inspiring Healthy Futures: A Vision for Children, Youth and Families In Canada, identifies five Interlinked priorities to measurably improve the health and wellbeing of children and youth In Canada. Research is recognized within the framework as a critical contributor to health and wellbeing, but must be integrated seamlessly into Canadian policy and practice to truly influence child health outcomes.  

With this in mind, let’s dream together as we consider the future work of CHILD-BRIGHT. Let’s consider questions never asked and strategies never tried as we continue engaging patients and families, funders, researchers, and key decision makers in this critically important work.

What do you believe we can do to help to continue to fund critical research into brain-based developmental disability in children? Share your thoughts in the comments below.

Dreaming Together of the Future of Patient-Oriented Research at the 2021 CHILD-BRIGHT Virtual Symposium

On Wednesday, May 26, health professionals, researchers, research staff, patient-partners, parent-partners, and family members came together for our 2021 CHILD-BRIGHT Virtual Symposium. A total of 192 participants from these different stakeholder groups attended our online event to explore the future of patient-oriented research (and brainstorm solutions to patient engagement issues) in the field of brain-based disability in children.

Nine CHILD-BRIGHT research teams kicked off the event with video updates to share  their accomplishments and hopes for their research moving forward.

Watch a recording of these project updates, along with the Q&A periods:

Following this lively session, participants were invited to “drop in” to virtual poster sessions organized along five major themes: Community-Engaged Research & Partnership, Clinical Research & Supports, Knowledge Translation & Exchange, Training & Capacity-Building, and COVID-19: Research & Virtual Care.

Participants also provided their perspectives in two brainstorming sessions throughout the day, offering input on two patient engagement issues:

1. How to make consent and assent forms in child health research appropriate to an inclusive audience, and

2. Strategies that the child health community can employ to better advocate for additional funding opportunities that will secure brighter futures.

Thank you to everyone who attended for the enriching and fruitful discussions. Stay tuned to hear more about the results of one of our brainstorming sessions in the coming weeks!

Want to make sure you’re in the loop for future CHILD-BRIGHT virtual events? Follow us on Twitter and Facebook and stay up-to-date on all our news and events!

Summer Studentship Program Features New Patient-Partner-Led Training Session

Kent Cadogan Loftsgard, fourth from left, representing CHILD-BRIGHT patient-partners at the 2018 CIHR-SPOR Summit

We are thrilled to welcome 14 new trainees to CHILD-BRIGHT for the 2020 CHILD-BRIGHT Summer Studentship Program!

Every year, CHILD-BRIGHT helps train a new cohort of students in patient-oriented research (POR) by helping our project and program teams hire trainees for the summer. For the 2020 edition, we earmarked over $45,000 to support these trainees, who will be working with nine CHILD-BRIGHT research projects.

As part of the onboarding, trainees follow a five-part introductory training series to learn about the concept of patient-oriented research. This year, we are especially excited to acknowledge CHILD-BRIGHT patient-partner Kent Cadogan Loftsgard’s involvement in the 2020 CHILD-BRIGHT Summer Studentship Program.

Kent has a diverse background ranging from health communication to clinical education. He is heavily involved in the SPOR community and CHILD-BRIGHT, where his perspective and wealth of knowledge inform a variety of POR initiatives.

In addition to his participation in the program, Kent will introduce and facilitate a new webinar this year where he will share some of his insights into research with trainees, from his perspective as a patient-partner.

For the past three years, the practical experience and the learning activities provided through the 2020 CHILD-BRIGHT Summer Studentship Program have equipped trainees with the knowledge and skills to better engage patients as partners in the research process as they work towards becoming tomorrow’s leaders. We hope the 2020 edition does the same for this summer’s trainees.

Subscribe to our newsletter to receive quarterly updates about our network, including about our trainees’ experiences in the 2020 CHILD-BRIGHT Summer Studentship Program!

A First Publication for Former CHILD-BRIGHT Summer Student Liel Cohn

Every year, CHILD-BRIGHT helps train the next cohort of students in patient-oriented research by enabling our project and program teams to hire trainees for the summer. Students become active members of the research team and explore the concept of patient engagement within the research process. The studentship experience lasts between 12 and 16 weeks, but if former CHILD-BRIGHT summer student Liel Cohn is any indication, the benefits of the learning experience extend well beyond those summer months.

Liel is the first former CHILD-BRIGHT summer student to be published as the lead author in a journal. Her new systematic review “Health Outcomes of Parents of Children with Chronic Illness: A Systematic Review and Meta-Analysis” was published on Jan. 6 in the Journal of Pediatrics. It finds that parents of chronically ill children experience poorer health outcomes than parents of unaffected children. This would in turn demonstrate a need to screen parents for mood and anxiety disorders, in particular, and develop and put into place targeted interventions to better support caregiver wellbeing.

The research process that culminated in the literature review began in 2017, when Liel was an undergraduate studying life sciences at McMaster University. In the summer of that year, she undertook a studentship at SickKids with Dr. Eyal Cohen, who is the Principal Investigator (PI) of the review in addition to being a PI with the CHILD-BRIGHT Coached, Coordinated, Enhanced Neonatal Transition (CCENT) project.

"I really had little to no research background [prior to beginning the studentship],” Liel explained to us following the paper's publication in January. "I really was learning everything from the ground up." 

The studentship offered her the hands-on opportunity to begin combing through the literature on the health outcomes of caregivers, yielding some unexpected results along the way. "I was honestly surprised to see that the vast majority of the papers [reviewed] reported negative outcomes for these parents, especially higher rates of anxiety and depression," she told us. Just as surprising was the lack of data on caregivers' physical health and on the health of fathers. For example, only one of the 26 papers that met the inclusion criteria for the review focused on physical health outcomes of caregivers. She hopes interest in the review will spur interest in learning more about these two topics, in addition to raising awareness about the struggles these caregivers may face—and encouraging institutions to build up their capacity to recognize and alleviate these challenges. 

Since 2017, Liel has moved to Israel and is completing her final semester of a life sciences and biology degree with a minor in cognition at the Hebrew University of Jerusalem. She intends to apply to medical school with the hope of pursuing pediatrics.

That doesn't mean she has left her CHILD-BRIGHT experience behind, however. Her time as a summer student continues to resonate, as the lessons learned about patient-oriented research are ones she will take with her as she trains her sights on practicing medicine: "CHILD-BRIGHT gives a different outlook on how to look at research. It really brings people together to think about how we can together as researchers, given our different values, opinions, and backgrounds, build a more patient-oriented research mindset."

"I definitely plan on bringing that with me and hopefully improve the research field, as much as I can in that regard, and patient experience.”

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Are you a former CHILD-BRIGHT summer student? We want to hear from you! Let us know what you've been up to by writing to: communications@child-bright.ca.

Helping Match UBC Students to Patient-Oriented Initiatives

As part of our efforts to enhance the capacity for patient-oriented research through practical research experience at academic institutions, we are proud to share that with the support of the BC SUPPORT Unit, we have developed the Patient-oriented Research Repository (PoRR) at the University of British Columbia (UBC). This initiative is possible thanks to funding from UBC’s Strategic Investment Fund.

“PoRR is a matchmaking platform that will help connect UBC students with an array of available patient-oriented research (POR) opportunities affiliated to UBC,” says Pierre Zwiegers, CHILD-BRIGHT Training Program Coordinator. “It will support local investigators in hiring undergraduate assistants throughout an academic term.”

CHILD-BRIGHT’s Training Program team will support the development and maintenance of the online PoRR matchmaking platform and will help train students in POR using CHILD-BRIGHT’s introductory POR training modules, which were initially designed and presented as part of CHILD-BRIGHT’s Summer Studentship Program.

“By providing UBC students with experiential and practical learning opportunities in patient-oriented research settings, we will help increase their knowledge, understanding and skills relating to patient-oriented research,” says Zwiegers. “This will enable these students, who are Canada’s next generation of researchers, clinicians, and health care decision makers, to adapt to a rapidly evolving health research environment.”

After assessing the uptake and response to the UBC PoRR initiative, CHILD-BRIGHT hopes to pursue similar opportunities and partnerships at other academic institutions across Canada.

For more information about the PoRR, contact porr@cmmt.ubc.ca.

Announcing the 2018 CHILD-BRIGHT Training Innovation Fund Winners

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:

Project:

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

Kathryn Parker

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

Funding amount granted:
$9,979

Project timeline:
Jan-Dec 2019

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.

Project:

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

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.

Congratulations!

Meet 2017 Summer Studentship Recipient: Simon Robins

CHILD-BRIGHT is proud to offer opportunities to help involve future generations of researchers, health professionals and leaders in patient-oriented work in Canada.  Meet Simon Robins, one of our 2017 Summer Studentship recipients, and read his reflections on his time at CHILD-BRIGHT.   

Name: Simon Robins
Studying: Master of Library and Information Studies, UBC
Focus of summer internship:
CHILD-BRIGHT Optimizing the Management of Pain and Irritability project

"Through the CHILD-BRIGHT summer studentship program, I’ve been able to assist my research team in developing an outreach strategy which ensures successful knowledge translation of our research process and outcomes to a broader audience through a new website. The research project being communicated is titled “Optimizing the Management of Pain and Irritability in Children with Severe Neurological Impairments,” and is led by Dr. Hal Siden. This study evaluates the assessment and management of pain and irritability in children with neurological impairment. This is a randomized, multi-site trial of a clinical pathway to focus and streamline the evaluation and assessment of this population.

“I made sure to keep in mind the importance of creating a website which is oriented towards patients and their families and is easily understood by non-academics.”

To effectively translate this online knowledge and revise existing content on Dr. Siden’s past projects, I relied heavily on the patient-oriented research articles and the webinar discussions from the summer studentship program. Above all, I made sure to keep in mind the importance of creating a website which is orientated towards patients and their families and is easily understood by non-academics. I primarily achieved this by implementing a user-friendly design and by testing our content on our Family Advisory Committee (upcoming).

For the bulk of my project, I re-designed and drafted new content for PedPalASCNET's website using WordPress. To begin, I reviewed existing content from other lab websites, and drafted content based on trends I found. I then planned interviews to gather families’ stories on their experiences participating in our research, and to test the early designs and content to make sure that they are usable and understandable. Focus groups have been scheduled to gather similar feedback from families.

In addition, I managed PedPalASCNET’s social media/mailing lists. This work with social media directly informed our ongoing outreach strategy by allowing me to analyze our twitter data, our website usage through Google Analytics, and the analytics on our MailChimp emails. We made an effort to find twitter users who identified as families of sick children and track which tweets were popular. As a result, the research network now has a better sense of what the research and patient communities engage with the most, and we have tailored our web content according to these trends.

“I will continue to involve patients and caregivers when designing the information resources which are meant to serve them and their health providers.”

As a library and information studies student I am highly interested in outreach and scholarly communications within academic libraries and research networks, and I feel I have gained greater exposure to this type of work by helping to redesign the website and conduct outreach through social media and patient interviews. Through weekly tweets and retweets about current event articles and the latest academic research, I feel more confident about my ability to generate engagement and attract new followers within the research, patient, and caregiver communities. I also feel more confident about my ability to translate knowledge within websites by employing user-centred design and by framing complicated research topics into language that is easier to understand. This above all depends upon caregiver and patient feedback.

In the future I will continue to involve patients and caregivers when designing the information resources which are meant to serve them and their health providers."

Meet 2017 Summer Studentship Recipient: Chelsea Yeo

CHILD-BRIGHT is proud to offer opportunities to help involve future generations of researchers, health professionals and leaders in patient-oriented work in Canada. Meet Chelsea Yeo, one of our 2017 Summer Studentship recipients, and read her reflections on her time at CHILD-BRIGHT.

Name: Chelsea Yeo
Studying: BSc (Psychology), St. Francis Xavier University
Focus of internship:
CHILD-BRIGHT Strongest Families Neurodevelopmental project

"The opportunity I had to work on the Strongest Families Neurodevelopmental CHILD-BRIGHT research project opened my eyes to patient-oriented research and what it involves. I learned from collaborating with parent advisors, synthesizing their thoughts and ideas, and learned about the program's themes. Not only did this studentship give me the opportunity to experience a different type of research process, it helped me to see its value.

“Everyone has a story that makes their experiences, ideas and thoughts unique.”

As a young career-minded individual, I believe that working on the SF Neurodevelopmental project reinforced my pre-existing beliefs concerning the value of others’ experiences and will help me in my career going forward. Everyone has a story that makes their experiences, ideas and thoughts unique. This speaks to the importance of being open and able to listen.

Hearing the stories and speaking with parents about obstacles they’ve overcome allowed the intervention to be more specific to the needs of children with disabilities and their families. Specifically, there were many things that these parents experience that can’t be found in a book that made their advice invaluable to our project.

Going forward I will apply this lesson to my career path but also to life in general."

Meet 2017 Summer Studentship Recipient: Elisa Lau

CHILD-BRIGHT is proud to offer opportunities to help involve future generations of researchers, health professionals and leaders in patient-oriented work in Canada.  Meet Elisa Lau, one of our 2017 Summer Studentship recipients, and read her reflections on her time at CHILD-BRIGHT.

Name: Elisa Lau
Studying: BSc (Integrated Sciences with a focus on Genomics and Neurobiology), UBC
Focus of summer internship:
CHILD-BRIGHT IMAGINE project

"I’ve learned so much over this past summer. 

In May I was invited to join the Friedman Lab at UBC as a research assistant on the IMAGINE project, which is a diagnostic study aimed at finding genetic causes for atypical cerebral palsy. It was an amazing opportunity to gain research experience within a clinical setting, and work with a complex team of health care specialists. This was especially valuable to me because I hope to pursue genetic counselling after completing my undergraduate education. 

“I was also given the opportunity to design an information tool to describe metabolomics to the lay public.”

I was fortunate to become involved in IMAGINE right from its beginning. This allowed me to not only directly witness the process of shaping an international research project, but also assist in many of its aspects. My mentors guided me through data handling, clinical chart reviews, specimen collection, presentation skills, and how to properly and respectfully interact with patients and their families.

I was also given the opportunity to design an information tool to describe metabolomics to the lay public. Having just completed an introductory cell biology course in the spring, it was quite the learning curve! Clinical knowledge aside, as an unseasoned student worker, some of the most mundane tasks like juggling a spreadsheet, or planning an effective filing system for data presented as unexpected little challenges to me. 

“I learned firsthand that genetic counsellors can be researchers, writers, educators, project managers, and so much more.”

Working with the Friedman team completely expanded my view of the genetic counselling profession beyond the limited scope of the information available online. I learned firsthand that genetic counsellors can be researchers, writers, educators, project managers, and so much more. It is a new and evolving field, and I am very excited to hopefully be part of it in the future. I am thankful to the CHILD-BRIGHT Network and everyone at the Friedman lab for providing me with this studentship experience." 

Meet 2017 Summer Studentship Recipient: Liel Cohn

CHILD-BRIGHT is proud to offer opportunities to help involve future generations of researchers, health professionals and leaders in patient-oriented work in Canada.  Meet Liel Cohn, one of our 2017 Summer Studentship recipients, and read her reflections on her time at CHILD-BRIGHT.

Name: Liel Cohn
Studying: BSc (Life Sciences), McMaster University
Focus of internship:
CHILD-BRIGHT Training Program

"The CHILD-BRIGHT Summer Studentship  provided me with the incredible opportunity to learn about new developments in research and the importance of patient involvement. Through engaging webinars and interesting readings, not only did I gain a new perspective but I also developed tools that will help me incorporate patient-oriented research into my current and future research endeavors.

“By educating patients and their families properly, and involving them in the research projects, physicians and scientists are able to provide what seems to be the most effective care, leaving the patient feeling more comfortable and confident than ever before.”

For my final project, I received the task of constructing a Venn diagram that compares and contrasts patient-oriented research with traditional health research. This project helped me recognize the faults in the traditional methods, while also highlighting the challenges in properly incorporating patient-oriented research in common practice. Despite being challenging, I now feel that patient-oriented research is the future model for research studies and is essential in promoting and developing the concept of individualized medicine.

Overall, this experience has further established my interest in patient-oriented care and research in the health care field."

Meet 2017 Summer Studentship Recipient: Shannon Morrison

CHILD-BRIGHT is proud to offer opportunities to help involve future generations of researchers, health professionals and leaders in patient-oriented work in Canada.  Meet Shannon Morrison, one of our 2017 Summer Studentship recipients, and read her reflections on her time at CHILD-BRIGHT.

Name: Shannon Morrison
Studying: Master's (Social Work), McGill University
Focus of internship:
CHILD-BRIGHT Strongest Families Neurodevelopmental Project

"This summer I had the opportunity to not only learn about patient-oriented research through the CHILD-BRIGHT Student Fellowship but to also experience how this type of research is done through my involvement with CHILD-BRIGHT’s Strongest Families Neurodevelopmental Team.

“I feel that I cannot proceed with future projects without thinking about who I should be talking to from the community.”

The value of hearing feedback from families and patients who are able provide comments on the direction, goals, and methods of a project that are grounded in their lived experience has been undeniable. This experience will affect any future research endeavors.

I feel that I cannot proceed with future projects without thinking about who I should be talking to from the community where the research will be based and how to incorporate their thoughts and ideas into the project so that it can create outcomes that are meaningful and useful for their community. "