Title: Youth and Family Specific Engagement in Research (UNITE): A Framework Development Project
Funder: Canadian Institutes of Health Research (CIHR)
Role: Nominated Principal Investigator: Munce, Sarah; Co-Principal Investigators: Toulany, Alene; Jarrett, Clementine; Co-Investigators: Allemang, Brooke; Bailey, Katherine; Biddiss, Elaine A; Buchanan, Francine; Cross, Andrea; Cunningham, Jessie; Dimitropoulos, Gina; Kastner, Monika; Killackey, Tieghan; Kokorelias, Kristina M; Micsinszki, Samantha; Niles, Chavon.
Study summary: Patients are essential partners in health research, as their lived experiences and knowledge can enhance the quality, relevance, and impact of research. While patient engagement benefits patient partners, researchers, and research projects, it also presents challenges and risks, including tokenism, power imbalances, lack of accessible and patient-friendly training, and insufficient tools for equitable engagement. To address these issues, patient engagement frameworks have been developed. Although these frameworks have improved patient engagement in health research, they are less effective for youth and family-specific engagement. This study will lay the groundwork for developing a youth and family-specific engagement framework (UNITE) and, subsequently, a tool to measure meaningful engagement in research for youth and families.