Lindsey (Ze Jing) Zhang, BHSc is a second-year medical student at the University of Ottawa's Faculty of Medicine. Her journey into medical research began during her undergraduate program at McMaster University, where she led a scoping review on the stigma faced by patients with sickle cell disease (SCD) in emergency departments. Under the mentorship of Dr. Madeleine Verhovsek, Lindsey developed a deep understanding of the health inequities affecting SCD patients. This experience, coupled with her work with the Sickle Cell Awareness Group of Ontario, has fueled her passion for advocacy and patient support.
Upon entering medical school, Lindsey developed a keen interest in Obstetrics & Gynecology (OB/GYN), drawn by the specialty's numerous advocacy opportunities related to women’s health. Under the supervision of Dr. Ann Malinowski, she aims to address unresolved health equity issues, particularly those affecting marginalized populations such as individuals with SCD. This award will enable her to explore these interests further while continuing her advocacy and career aspirations in OB/GYN.
Research Focus
Lindsey’s research focuses on the perspectives and lived experiences of pregnant patients with SCD. SCD is a genetic condition that significantly impacts maternal and fetal health during pregnancy, leading to higher rates of maternal mortality, severe vaso-occlusive events, thrombosis, hypertensive disorders, intrauterine growth restriction, preterm birth, and perinatal mortality. Despite the extensive quantitative data on SCD in pregnancy, there is a lack of qualitative data capturing the patient perspective.
Research Goals
The primary objective of Lindsey's research is to explore the lived experiences of pregnant patients with SCD. By understanding the facilitators and barriers these patients face in their care, her study aims to give voice to this long-marginalized population and inform future interventions to improve obstetrical care for patients with SCD.
Research Methods
Lindsey will employ qualitative methodology to gather data through semi-structured interviews with pregnant SCD patients. Participants will be recruited from Mount Sinai Hospital in Toronto and the Sickle Cell Awareness Group of Ontario (SCAGO) database. The interviews will be audio-recorded, transcribed, and coded by two separate members of the research team. A thematic analysis will be conducted to identify key themes and insights.
Supervision and Mentorship
Lindsey’s research will be supervised by Dr. Ann Kinga Malinowski, a Maternal-Fetal Medicine Specialist at Mount Sinai Hospital and Co-Director of the Haematology in Pregnancy Clinic. Dr. Malinowski, an Associate Professor at the University of Toronto and a Clinician Investigator at the Lunenfeld-Tanenbaum Research Institute, brings extensive clinical and research expertise concerning pregnant SCD patients. She will guide Lindsey through research design, methodology, ethics application, recruitment, data collection, analysis, and manuscript preparation. Dr. Malinowski’s guidance will be instrumental in shaping Lindsey's research and ensuring its success.
Pedrom Farid and Marco Herrera are both first year medical students at the University of Western Ontario with a robust background in both basic science and clinical research. Their passion for hematology and commitment to enhancing healthcare in their community drive their current research efforts. Their goal is to not only advance knowledge within the medical field but also to advocate for better health outcomes for patients with SCD. They are passionate and driven to share their work at international conferences like ASH to help advocate for their community and improve health outcomes in patients with sickle cell disease.
Research Focus
The focus of Pedrom and Marco’s research is on evaluating the quality of care provided to patients with SCD at community hospitals in southwestern Ontario. Despite the development of the Ontario quality standards to guide Sickle Cell Disease care, disparities remain, particularly in non-academic settings where established protocols may not be as rigorously followed. By examining care delivery at hospitals like Windsor Regional Hospital, Erie Shore HealthCare, and Chatham Kent Health Alliance, the research seeks to identify whether these institutions are meeting guideline-recommended care standards for SCD.
Research Goal
The primary goal of this research is to improve the quality of care for SCD patients who present to community hospitals. By identifying gaps in care—such as delays in pain management, inappropriate use of transfusions, or failure to utilize evidence-based care tools—the researchers aim to advocate for targeted improvements. Their findings could lead to the implementation of new protocols and support systems, not only in the Windsor region but potentially in other communities as well.
Research Method
Pedrom and Marco’s research involves a detailed retrospective chart review of patients with SCD who have presented to emergency departments over the past decade. They are meticulously analyzing data on various care metrics, such as the timeliness of pain management, the appropriateness of treatments administered, and the use of supportive care tools. Their work also includes a comparison with care provided at London Health Sciences Centre, a leading academic hospital in the region, to identify areas for improvement in community-based hospitals.
Supervision and Mentorship
This important research is being conducted under the mentorship of Dr. Cervi, a classical hematologist with a strong focus on non-malignant hematology. Dr. Cervi, who was born and raised in Windsor, has been instrumental in improving care for patients with hemoglobinopathies in the region. Since joining Windsor Regional Hospital in 2021, she has implemented evidence-based order sets and provided multidisciplinary education to enhance SCD care. Dr. Cervi’s guidance has been invaluable to Pedrom and Marco, and her dedication to advancing care for SCD patients is a key driving force behind this project.
The Importance of This Work
The research conducted by Pedrom and Marco is not only novel but essential. By shining a light on the disparities in SCD care in community hospitals, they are addressing a critical gap in healthcare delivery. Their work has the potential to significantly impact the quality of life for patients with SCD by advocating for better, more consistent care across various healthcare settings. This project represents a major step forward in the ongoing effort to reduce healthcare disparities and improve outcomes for all patients with sickle cell disease.
The 2023 recipient of the Young Researchers’ Award Program is Katie Chen from the Master of Biomedical Engineering program in the Department of Systems Design Engineering at the University of Waterloo. She is developing and testing the SickleSupport app, a companion mobile app designed to improve the quality of care for patients with sickle cell disease through a symptom tracker and hub that provides financial, social and educational resources.
Katie recently completed her undergraduate studies in biomedical engineering at the University of Waterloo and is currently working on her Masters degree, also in Biomedical Engineering. She is passionate about improving the quality of clinical care through human-centric engineering design and has worked on a variety of medical technology projects.
Katie Chen’s Research
Focus: This research will focus on improving the quality of clinical care provided to patients with sickle cell disease (SCD) and enabling greater capacity for self-advocacy in patients. This research aims to address challenges such as the lack of symptom tracking tools and an organized hub of resources available for patients, and the mistreatment of SCD symptoms in the emergency department.
Goal: The goal of this project is to develop and test the SickleSupport App, a mobile companion app designed to improve the quality of care for patients with SCD through a symptom tracking tool and hub that provides financial, social, and educational resources.
Method: The research plan involves three major stages: user interface (UI) design, software development, and data analysis. The team will complete the UI development of the app, collect feedback from target users, and conduct feasibility testing to evaluate whether the SickleSupport App improves the quality of care for patients with SCD.
Project Supervisors: Dr. Ziad Solh and Dr.Eric To- London Health Science Centre, London Ontario.
Congratulations to Katie for your incredible work and achievements thus far! The Sickle Cell Awareness Group of Ontario is very excited to support your research!
The 2022 recipients of the Young Researchers’ Award are Geil Astorga, Peola Ellis, Fairuz Karim, Janine Noorlos, and Jaspreet Randhawa in the Masters of Health Sciences Translational Research Program at the University of Toronto’s Temerty Faculty of Medicine. They are developing the Sickle Cell Disease Management, Advocacy Guide, and Resources for Transitioning Youth (SMART) Health App.
At the Sickle Cell Awareness Group of Ontario, we prioritize improving the health and quality of life of all individuals with sickle cell disease, including through innovative research. To continue making strides towards this goal, each year we award a grant to a sickle cell disease-related research project led by bright-minded students through our Young Researchers’ Award Program.
The 2022 Young Researchers’ Award recipients are a team of Masters students at the University of Toronto’s Temerty Faculty of Medicine: Geil Astorga, Fairuz Karim, Peola Ellis, Janine Noorloos, and Jaspreet Randhawa!
Focus: Their research will focus on the challenges that patients with sickle cell disease face when transitioning from paediatric care to adult care centres. A lack of shared-decision making, family/caregiver involvement, and self-care skills are all amongst the difficulties that patients may experience when undergoing this transition.
Goal: The goal of their project is to develop the Sickle Cell Disease Management Advocacy Guide and Resources for Transitioning Youth (SMART) Health App, which will integrate family cantered care and reduce barriers to care by raising awareness and knowledge on disease management.
Method: The team will first consult key opinion leaders and stakeholders to develop the contents of the app. They will then test the tool with key stakeholders and individuals with lived experience, incorporating their feedback into a refined version of the app.
Congratulations to Geil, Fairuz, Peola, Janine, and Jaspreet for your incredible work thus far and the Sickle Cell Awareness Group of Ontario is very excited to support your research!
The 2019 & 2020 recipient of the Young Researchers’ Award is Dr. Derek Chan (MD/Ph.D. Candidate, Hope Lab), Stem Cell, and Cancer Research Institute. Michael G. DeGroote School of Medicine at McMaster University. His research topic was “Evaluating Health Resource Utilization Patterns in Sickle Cell Disease in Emergency Departments in Ontario, Canada.
Learn more about his research here
