Meet 2021 Summer Studentship Recipient: Claire Zhang

Working with the Jooay App project team as part of the 2021 CHILD-BRIGHT Summer Studentship Program, Claire Zhang was 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. Claire also supported a number of key knowledge translation activities related to the Jooay App.

Here is what Claire had to say about the summer student experience:

“This summer, I was able to work on the Jooay App and participate in the CHILD-BRIGHT Summer Studentship Program. From the beginning, we were introduced to the behind-the-scenes of running the app, including editing and finding new appropriate activities to add. I learned how much consistent effort and maintenance a project such as Jooay requires. Then, as I slowly accumulated experience, I began to learn more about the many different needs of children and youth with disabilities, and about the diverse leisure opportunities available to them. This helped change my perspective – any child or youth who wants to participate in an activity, sport, or social activity can do so, it’s simply a matter of finding the right program for the right person.

I was also fortunate enough to attend a meeting with Jooay’s co-investigators and patient-partners this summer. Listening to the many different perspectives and concerns at the meeting helped consolidate what I was learning in the summer studentship webinars and modules. Seeing the material I was learning about being applied in real time made the experience all the more valuable and memorable.  

My future career goals are not yet set in stone, but I’d be interested in pursuing a career in medicine. Needless to say, this summer experience with patient-oriented research and learning about diverse, individual needs will help me along this path.”

Meet 2021 Summer Studentship Recipient: Ting Xiong

Working with our Strongest Families Neurodevelopmental Program team as part of the 2021 CHILD-BRIGHT Summer Studentship Program, Ting Xiong helped establish a knowledge translation plan and study for the survey results of the Life Beyond Trauma research study, including analyzing the data, and writing a manuscript for publication in an academic journal. 

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

“Even though this was my second time participating in the CHILD-BRIGHT Summer Studentship Program, I learned many new things about patient-oriented research.

Parent advisors and advocates helped me improve my communication skills. I also learned that when setting up a research team that includes patient-partner involvement, it is important to stay respectful, especially of parents’ availability and their willingness to participate in the decision-making process. I found the patient-partners I have interacted with to be passionate in devoting their time and their thoughts to the project. The perspectives they brought to the project were really meaningful and inspiring. The patient-partners helped shape the content of the program, the design, and recruitment. They were empowered to make decisions at every step, which actually motivated them to devote more to this study.

I also learned about some of the drawbacks of a traditional research framework, which includes researchers and funding agencies but not the general public or the targeted population. Without patient engagement, researchers risk pursuing research questions that are not as meaningful to patients. Patient-oriented research requires additional time and financial resources, but it can be very rewarding for researchers as well as patients.

This experience will help me in my goal of doing research in academia. Thanks to my interactions with our stakeholders, I am aware of the positive influences of our research activities. Some parents described our program as life-changing; positive feedback like this is very motivating. Participating in the studentship program this summer also has influenced my understanding of a research team. A research team without patient/public engagement is incomplete. Public perspectives are essential, especially in clinical trials, as they help to deliver health services more effectively to the people who really need it in a more user-friendly way. It ensures that the research work addresses questions of interest to the patients.”

Meet 2021 Summer Studentship Recipient: Deena Hassan

Working with our PIUO project team as part of the 2021 CHILD-BRIGHT Summer Studentship Program, Deena Hassan worked on a sub-study that aims to describe the characteristics of children with neurological impairment with neuroirritability requiring hospitalization and the clinical care they receive.

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

“I had no knowledge about patient-oriented research prior to this studentship, so I’m grateful to have had the opportunity to learn. Over the summer, I evaluated the clinical care received by children with severe neurological impairment (SNI) who were admitted to the Complex Care Program at SickKids with suspected pain or neuroirritability. Although pain is the most common symptom reported by caregivers of children with SNI, it is difficult to identify and treat in this population since their signals of distress are often ambiguous and hard to decode. My role over the summer involved reviewing medical charts to better understand how these children were managed, and what investigations were done to determine a potential cause for the pain and irritability. Accessible knowledge translation was one of the main concepts of patient-oriented research I learned over the summer, which will be helpful when writing manuscripts.

Through engaging webinars, group activities, and discussion posts, I learned the benefits and importance of involving patients as partners in research studies. It is vital that researchers involve caregivers and/or patients in outlining concerns, goals, and outcomes that are most important to them. Doing so ensures the research in question will be more meaningful and impactful for the target population. Additionally, patients bring a unique perspective that researchers often lack. Creating a positive and welcoming environment where patients and researchers collaborate can empower patients to contribute their thoughts and perspectives.

These are some of the gems from this summer’s program that I will apply in my future research endeavours. I have a non-profit that focuses on the intersection of low-income families and metabolic syndrome, with an emphasis on type two diabetes. I want to create a focus group of individuals affected by this problem, so they could outline goals, concerns, and outcomes they wish to see (and be involved in) for future research studies. I hope that one day we could collaborate with the Banting and Best Diabetes Centre research council at the University of Toronto!”

Meet 2021 Summer Studentship Recipient: Isobel Fishman

Working with our PIUO project team as part of the 2021 CHILD-BRIGHT Summer Studentship Program, Isobel Fishman worked on a sub-study that aims to describe the characteristics of children with neurological impairment presenting with neuroirritability that require hospitalization, as well as the clinical care they receive.

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

“I have thoroughly enjoyed participating in the CHILD-BRIGHT Summer Studentship Program and working on a CHILD-BRIGHT research project this summer. Before this program, I knew little to nothing about patient-oriented research (POR) and I am so grateful for all that I learned these past few months. In our very first webinar of the summer, we talked about the challenges of knowledge translation and how biomedical research unfortunately does not always translate into improved health outcomes. One way to address these gaps in the research-to-practice continuum is to recognize patient-identified research priorities and engage patients as research partners.

There are many different levels at which patients can participate in research. One lesson I learned this summer is that there may be barriers to patient engagement at any of these levels. Patient-oriented research is a growing field, and a lack of resources and limited experience with POR may make it more challenging than undertaking traditional forms of research. However, the opportunity emphasized several ways to overcome these barriers, which I look forward to utilizing in my future research endeavours.

This summer, I evaluated the clinical care received by children with severe neurological impairment (SNI) who were admitted to hospital after going to the Children’s Hospital of Eastern Ontario’s emergency department with suspected pain or neuroirritability. Pain is the most common symptom reported by caregivers of children with SNI; however, pain is difficult to identify, and therefore treat, in these children because their signals of distress are often ambiguous and hard to decode. As a summer student, I reviewed charts to better understand how their care was managed, and what investigations were done to determine a cause for the pain and irritability.

Since the PIUO project involves non-verbal children, the parents’ understanding of their child’s situation is critical to developing appropriate research questions that will inform clinical practice. To this end, the PIUO project has a Parent Advisory Group that has provided important input on the study protocol, data collection tools, and other aspects of the study.

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

Meet 2021 Summer Studentship Recipient: Matthew Kaufhold

Working with our PIUO project team as part of the 2021 CHILD-BRIGHT Summer Studentship Program, Matthew completed a literature search providing evidence for the prevalence of patient-partners in pediatric health literature, specifically as co-authors with accreditation for research publications.

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

“My experiences this summer working on a CHILD-BRIGHT research project and attending the Summer Studentship Program have been extremely valuable. They provided a strong foundation for understanding and exploring patient-oriented research. Now that I have completed the studentship, I have a much more robust grasp of what patient-oriented research entails. Through both my research project and the training program, I gained a deeper understanding of the research life cycle, as well as the importance of involving patient-partners in all aspects of the research process. I am sure that both these learnings are going to play an important part in my future career endeavours.

These experiences have also increased my confidence in my research abilities by providing me with opportunities to challenge myself in supportive environments and receiving constructive feedback. 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.”