We are students of the Master of Health Science in Translational Research in the Health Sciences, Department of Laboratory Medicine and Pathobiology, Temerty Faculty of Medicine at the University of Toronto.
PROJECT ADVISORY COMMITTEE
We are grateful for the unwavering support and guidance of our Project Advisory Committee Members.
Special thanks to Dr. Raza Mirza and Dr. Christopher Klinger for guiding the conceptualization of our project in the Knowledge Translation & the Community Module and Student Work and Research Module. Dr. Joseph Ferenbok, Director of the Translational Research Program has been an incredible supervisor who has provided his mentorship while reviewing our protocol & application to the Young Researchers Award.
We first started working together in the Knowledge Translation (KT) & Community module in the Fall of 2021, where we initially thought about creating a SMART Health App for youth with Sickle Cell Disease (SCD).
Patients with SCD often experience excruciating pain due to red blood cells taking on a sticky sickle cell shape and clumping together, which blocks oxygen flow throughout the body. Supports are mostly available for pediatric patients; however, those resources are often gone once they reach adulthood. As a result, youth with SCD have often reported feeling unprepared to manage and self-advocate for their health. Unsuccessful transition may lead to more chronic conditions or worse, fatality. Our goal is to create a digital resource for youth with SCD transitioning from pediatric to the adult healthcare system with a focus on patient- and family-centred care.
As part of the course, we completed an environmental scan of SCD transition in Canada and the US, developed a brand guide for the app, produced a promotional video highlighting the app features, and created a low-fidelity prototype of the App interface (login page, resource page, profile page, and location page). We also established a partnership with Serena Thompson, an SCD advocate. We met her at the Foundations class, and she inspired us to do work in SCD, hence the project focus.
We continued our project through the Student Work and Research Module (SWARM) in Winter 2022. During this time, we connected with Karen Fleming from North York General Hospital (NYGH) who introduced us to their Sickle Cell working group. In addition, we also drafted an REB application, survey questions, and focus group questions that we thought would help us move forward with the capstone project.
On February 28, 2022 we applied for the Young Researchers Award of the Sickle Cell Awareness Group of Ontario. We received the award on April 28, the same day our team member Jaspreet presented our research poster at the LMP Research Conference.
Throughout our journey, Drs. Raza Mirza and Christopher Klinger have been very supportive of our team and project. They helped us move forward at every stage, encouraged us to continue with our work, and even reviewed our submission for the LMP conference. Furthermore, Dr. Joseph Ferenbok, Director of the Translational Research Program has been an incredible supervisor who has provided his mentorship while reviewing our protocol & application to the Young Researchers Award.
As for the project, we decided to take a step back this summer upon further discussion with Dr. Ferenbok during our studies in the Translational Thinking module. One of the core aspects of the TRP is not ‘solution-jumping’, but understanding the problem thoroughly to provide the best possible intervention(s). There are existing interventions and technologies for youth with SCD, yet what can we learn from them and how can we translate research findings into beneficial outcomes for patients? Hence, we thought about connecting again with our community partners and expanding our partnerships to learn more about the problem space and the specific needs of our patients. In addition, we are exploring the co-design process that we hope to apply in our capstone project. This method builds on the concept of partnering and collaborating with key stakeholders in research rather than engaging with them as research participants.
The project started with Geil’s pitch in KT and the Community class to form a team focused on patient and family-centred care. Her work in knowledge translation and family-centred care inspired her to propose developing a website that can help guide clinicians and family members in navigating family-centred care.
After the team came together with a passion for focusing on patient- and family-centred care, we had a patient advocate for SCD, Serena Thompson, attend our Foundations class. Serena shared her struggles with transitioning from pediatric to adult care, finding resources and support organizations and the health inequalities present when seeking SCD treatment and management. She shared having to ‘dress up and look presentable’ before going to the Emergency Department, even if she is in so much pain, to make sure she is treated right. At times, she needs a friend to advocate for her during a pain crisis since not a lot of care providers are aware of SCD. A lot of services also stopped once she reached adulthood, and she was left to figure everything out with little to no support. The challenges Serena’s faced as a patient with SCD navigating the healthcare system inspired Jaspreet to pitch narrowing the team’s focus to SCD treatment and management to help make a difference in the lives of patients with SCD and their families. The team was extremely enthusiastic and passionate to focus on SCD and learn more about Serena’s experiences.
Peola’s area of interest is the application of nanotechnology in medicine. However, when she heard Geil’s pitch and Serena Thompson’s story about health inequity in the Emergency Department as a Sickle Cell Disease (SCD) patient; Peola felt that there was a gap that needed to be addressed between the lack of clinician knowledge of SCD and appropriate patient treatment.
Fairuz was also incredibly inspired hearing Serena Thompson’s stories and the advocacy work that she has been doing within the space. Fairuz is passionate about health equity, intersectionality, the social determinants of health, and participating in community-level change. She has been excited to be part of the team and in working in this area because of her desire to be a part of interventions and change for a more equitable healthy society.
Janine’s social services and healthcare background sparked her interest in methods to empower people with lived experience. She is looking forward to exploring how family-centred care can be used alongside a co-design process to better support people with SCD.
Jaspreet is interested in leveraging her background in health sciences and applied computing to create innovative interventions to improve healthcare, especially in the fields of pediatrics, cardiovascular, and reproductive health. Jaspreet has developed a passion, alongside a need, to bridge the gap between research and knowledge to improve patient care and empower our communities by partnering with our patients and stakeholders. Jaspreet is excited to be adapting and adopting the experience-based co-design methodology for the SMART project.
The project may have evolved when compared to the initial pitch—but this is the TRP approach in action. We reached out to key stakeholders and explored possibilities with them. Geil is thankful for the opportunity to do something to help patients with SCD. This project is at the core of why she joined the TRP, bridging her background in strategic communications and multimedia design with translational research to create an impact in people’s lives.
We scheduled a meeting with Serena Thompson and began our journey in this space without even realizing the impact this conversation could bring. Our conversations with Serena provided us with the expertise, knowledge, and guidance to explore the problem space and discover gaps. Moving forward with our project, we would like to engage in experience-based co-design processes to support patients with SCD and their families during the transitionary period moving from pediatric to adult health care centres. We need to expand our partnerships with patient advocates and experts to co-create and co-design our interventions. Our relationship with Serena as a partner has been pivotal to our project and we are hoping to expand that partnership in a structured manner.