Applying Principles of EDIA in Patient Engagement with Equity Deserving Groups

Moderator: Vina Mohabir.
Vina Mohabir (she/her) is a PhD student in Health Systems Research (Health Informatics Emphasis) at the University of Toronto’s Institute for Health Policy, Management, and Evaluation and a trainee in the iOUCH Pain Research Lab at The Hospital for Sick Children. Under the supervision of Dr. Jennifer Stinson and Dr. Chitra Lalloo, her research focuses on the co-design and usability testing of a digital stigma-reduction intervention for youth with sickle cell disease using participatory and user-centered design methods. She actively facilitates patient engagement in health research and digital health innovation across Canada and internationally. She integrates Justice, Equity, Decolonization, Indigenization, Inclusion, and Accessibility principles into her work to ensure that interventions are meaningfully developed with and for equity-deserving communities. As a cancer survivor and chronic pain advocate, Vina is deeply committed to centering Disabled, diverse, and low-income youth in research, policy, education, and clinical practice.

Panelists:
Samantha Louie-Poon, PhD, RN
Dr. Samantha Louie-Poon (she/they) is a Registered Nurse, Assistant Professor, and community advocate. Their philosophy is rooted in building meaningful human and community connections through stories, art-based methods, and thinking and imagining differently to improve the health, wellbeing, and rights of future generations. Specifically, Sam is passionate about storying the untold narratives of Asian diasporas across healthcare and social systems. Her clinical nursing background is in pediatric oncology/haematology and pediatric medicine. Their program of research, RAW: Reimagining Asian Wellbeing, is dedicated at advocating for the rights and wellbeing of Asian children and youth. Through a combination of research and community engagement, Sam is passionate about storying the intergenerational experiences of anti-Asian racism and (re)imaging knowledge systems used to support Asian youth well-being.

Anna Hood, PhD
Dr. Anna Hood is a Lecturer (Assistant Professor) in Psychology in the Division of Psychology and Mental Health and the Policy Director at the Manchester Centre for Health Psychology at the University of Manchester. Dr. Hood’s research examines the biopsychosocial challenges faced by pediatric patients living with pain, with a particular focus on children and young adults living with sickle cell. She has published extensively and collaborates on projects to understand pain from structural perspectives, develop mechanisms for restoration, and create pathways for justice to eliminate pain inequities. Dr. Hood was awarded the International Association for the Study of Pain Ulf Lindblom Young Investigator Prize for Clinical Science for her work with youth living with sickle cell in 2024.

Lanre Tunji-Ajayi M.S.M, BSc
Lanre is a global patient advocate committed to addressing disparities in care for hereditary blood disorders while strengthening equity, diversity, and inclusion in the global healthcare systems. To support these efforts, Lanre was instrumental in the establishment of the Sickle Cell Awareness Group of Ontario, the Ontario Hemoglobinopathy Patient Association, and the Sickle Cell Disease Association of Canada. She was also a past chair of the Network of Red Blood Disorders Organizations and a board member of the Black Health Alliance. Her efforts to build bridges across organizations dedicated to sickle cell disease and other inherited blood disorders are increasingly worldwide in scope, most notably through her capacity as a co-founder of the Global Action Network for Sickle Cell & Other Inherited Blood Disorders. She has also co-authored numerous research works. In recognition of her continuing advocacy and leadership on behalf of individuals living with sickle cell disease and their families in Canada, Lanre is a recipient of the Governor-General’s Meritorious Service Medal (MSM), the Senate Canada 150 Award, and was recognized as one of the 100 Accomplished Black Canadian Women in Canada.

David Manly, BSc, MJ
David has an Honours Bachelor of Science degree in Biology and a Master’s in Journalism. He has been a science writer, presenter, editor, and educator for 15 years. David has worked at SickKids since 2014 as the Research Program Coordinator of Kids Science, a science outreach and communication program for patients at SickKids and elementary and secondary students across the GTA. The program runs events, including workshops, demonstrations, lab and in-patient visits, collaborations with the PACT & Child Life teams, and internship and mentorship programs during the summer. Kids Science is focused on programming towards youth from historically marginalized communities in priority neighbourhoods, as well as provides a paid internship (known as StAR, or Student Advancement Research) program in research for Indigenous, Black, and Filipino students.