Meet 2021 Summer Studentship Recipient: Rachel Willis

Working with our SPORT project team as part of the 2021 CHILD-BRIGHT Summer Studentship Program, Rachel Willis focused on working with data collected from previous two-week camps that investigated the use of non-invasive brain stimulation combined with constraint therapy to improve hand function in children with cerebral palsy affecting one side of the body. Rachel participated in data cleaning and statistical analysis in order to contribute to a peer-reviewed manuscript. (“Cleaning” data refers to removing incomplete or invalid entries from a data set.)

Here’s what Rachel had to say about the summer student experience:

“The CHILD-BRIGHT Summer Studentship Program was an incredible opportunity for me to grow as a researcher and pursue my interest in helping children with brain-based developmental disabilities. This summer has taught me the value of hands-on experience in gaining confidence and sharpening the skill set required to conduct sound research. During my studentship, I was tasked with data cleaning and statistical analysis. With limited experience in quantitative research outside of a classroom setting, I was unsure of where to start. I took the initiative to conduct my own background research and sought support from experienced researchers on my team. In doing so, I was astounded by how quickly I developed a skill set in quantitative analysis. Through my work on a manuscript, I also had the opportunity to experience how data moves from being numbers in an Excel document to being communicated as findings in a scientific paper. This was exciting for me, as I could see how this work would be used to better inform treatment for children living with cerebral palsy.

Throughout the summer, I also participated in webinars and activities offered by the CHILD-BRIGHT Network that explored writing for different audiences, such as lay summaries compared to scientific publications. I was able to use the skills learned in these sessions to exercise my scientific communication skills in manuscript development, writing abstracts and project summaries, and designing infographics. Reflecting on the beginning of the summer compared to where I am now, I can see how I have significantly improved my writing. Through the program, I also learned that communication to different audiences is a critical skill for effective patient-oriented research. It is important to consider how information reaches all stakeholders to understand the priorities that matter to patients and where researchers can have the biggest impact. The set of skills I have built will be incredibly important as I begin and move through my career in research.

Prior to this summer, I knew I wanted to pursue a career in pediatric disability research. This experience has reaffirmed this passion, while also showing me the different career paths I could take to achieve this goal. Having recently completed my undergraduate degree, 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.”

Meet 2021 Summer Studentship Recipient: Amarpreet Chera

Working with our Parent-EPIQ project team as part of the 2021 CHILD-BRIGHT Summer Studentship Program, Amarpreet cleaned and analyzed data collected from a questionnaire sent to parents of children born very preterm and other key stakeholders about meaningful early childhood outcome measures. “Cleaning” data refers to removing incomplete or invalid entries from a data set. With assistance from the research team and a statistician, Amarpreet analyzed the results and wrote an abstract.

Here’s what Amarpreet had to say about the summer student experience:

“Being a CHILD-BRIGHT summer student totally changed my understanding of research. As a Life Sciences major, I automatically assumed research was about “hard science”, wearing a white coat and doing experiments in labs. I was introduced to a different world thanks to Parent-EPIQ and CHILD-BRIGHT. Over the summer, I worked under the supervision of Co-Principal Investigator Anne Synnes, who helped me better understand what it means to do patient-oriented research. I was blown away by the steps being taken to meaningfully engage parents and families in research decisions to improve quality of life.

I also benefited immensely from the CHILD-BRIGHT summer studentship training series. It included weekly activities like learning how to write plain language summaries of research articles and how to avoid jargon, which complemented my learning experience. Before the summer studentship, I took patient participation for granted and was unaware of the many ways it positively directs research. The program made me realize the importance of efficient knowledge translation from a research setting to a clinical setting. Many times, as individuals with a scientific background, we assume everyone understands scientific terminology. The ability to be able to translate research findings in a way that is easily digestible for the targeted population is a crucial skill to learn for patient-oriented researchers. I took patient participation for granted and was unaware of the many ways it positively directs research before becoming part of the project.

As I continue to work towards my goal of becoming a physician, I plan to implement everything I learned this past summer. I gained a new appreciation for patient-oriented research and am walking away with life experiences I did not know I would gain!”

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

---

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

---

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

---

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

---

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

---

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

---

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

---

“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

---

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.

The Evolution of Stakeholder Engagement at CHILD-BRIGHT, Part 3: Scratching Beneath the Surface

As part of our efforts to meaningfully engage patient-partners and improve our engagement levels, CHILD-BRIGHT has used different standardized questionnaires and surveys to gather feedback from our members on engagement. We shared our preliminary findings from these surveys in Part 1 of our series on the Evolution of Stakeholder Engagement at CHILD-BRIGHT, while in Part 2, we assessed the impact of the COVID-19 pandemic on our members’ engagement experiences.

We also conducted interviews with 25 of our Network members to dig deeper into the barriers and facilitators to engagement, as well as the impacts of patient-oriented research on patient-partners and researchers. The results of these interviews are now available in a new research brief, entitled Patient engagement in CHILD-BRIGHT’s patient-oriented research Network: Scratching beneath the surface. This is Part 3 our three-part series on patient engagement prepared by the CHILD-BRIGHT Network's Measuring Patient Engagement Working Group, a collaborative group of members from our Knowledge Translation and Citizen Engagement programs.

In this research brief, we share:

• The top facilitators of engagement with our research projects as well as with the wider Network that patient-partners and researchers reported to us

“When you take the time and effort to do that face to face, and everybody gets to know one another and knows what they’re there for, why they’re there and what they hope to get out of it, you do have that kind of respect and trust that then informs the rest of the engagement.”

— a CHILD-BRIGHT patient-partner on the importance of mutual respect and confidence

• The biggest barriers to engagement with our research projects and the wider Network that patient-partners and researchers reported to us

“You have to think about how and when to engage patient-partners to value their time. Sometimes research can be very slow and it’s a bit discouraging sometimes for patient- and family partners.”

— a CHILD-BRIGHT researcher on how maintaining engagement over time can be a challenge

• Our members’ thoughts about the impacts of a patient-oriented research approach

• Some of the ideas that patient-partners and researchers proposed to improve engagement at CHILD-BRIGHT

• Our Citizen Engagement Council and Knowledge Translation Committee’s recommendations for the next steps that should be prioritized by CHILD-BRIGHT to develop these solutions.

Thank you to all our Network members who took the time to share their experiences with us in the interview process!

Did you miss the first two parts of this series? Read Part 1 and Part 2 now.

2020-2021 Report to Community Now Available

We are happy to share that our Report to Community for the fiscal year ending March 31, 2021 is now available! This fully digital issue is available in English and French.

CHILD-BRIGHT's fifth year of operations was marked by the monumental challenges of living life and conducting research during a global pandemic. In these virtual pages, our network members—patients, parents, youth partners, researchers, committee members and support service teams—offer windows into how the COVID-19 pandemic has affected every part of their lives and work. The report’s theme, Resilience in Action, is intended as a recognition of how much our lives have been altered and of the incredible adaptability, flexibility, strength, and support our members have demonstrated in the face of these changes.

As always, we are grateful to our funding partners for their generous support of our work. We thank them and all our network members who have continued to fight for brighter futures for children and youth with brain-based developmental disabilities.