Marie-Ève is the postdoctoral fellow on the network’s Care Pathways for CHD project, under the supervision of principal investigators Mike Seed and Andrea Patey. In this Phase 2 CHILD-BRIGHT project, the research team aims to develop recommendations, based on current approaches used around the world, to optimize the identification of developmental delays in children and adolescents with a congenital heart defect (CHD) in Canada.
Marie-Ève oversees all aspects of coordinating the Care Pathways for CHD project. “My responsibilities include liaising with family partners, conducting comprehensive literature reviews, and leading our consensus groups,” she says. In this multifaceted role, Marie-Ève ensures that all voices are heard, that research is progressing well, and that the project is contributing to the advancement of neurodevelopmental care for children and adolescents with a CHD.
Marie-Ève has been interested in patient-oriented research (POR) since her first collaboration with a parent partner during her PhD. “I realized how important their feedback was,” she recalls. “But later, I realized that the project could’ve benefitted even more from their input.” She wished she’d had a deeper understanding of POR and the strategic integration of partner feedback throughout various project stages. “That’s when I decided to enroll in a patient-oriented research course.”
Marie-Ève believes that incorporating the perspectives of partners with lived experience (PWLE) in research has profound implications for the improvement of outcomes in our health care system. “Patient-generated research questions are instrumental,” she says. “They reflect the unique challenges faced by the individuals we’re trying to help.” While she knows she still has a lot to learn, Marie-Ève is optimistic that her ongoing collaboration with current research partners will help her learn and hone her expertise over time.