Health Equities
Jonathan Ellison, MD (he/him/his)
Medical College of Wisconsin & Children's Wisconsin
Gaines Blasdel (he/him/his)
Research Associate
New York University Langone Health, University of Michigan Medical School
Yaw Nyame, MD,MS
Assistant Professor
University of Washington
Angela Smith, MD (she/her/hers)
University of North Carolina
Course Description: Patient-centered outcomes research (PCOR) requires the meaningful engagement of patients, caregivers and other stakeholders throughout the research process. Patient and community engagement has been shown to improve research relevance, increase and diversify participation in research, improve retention in longitudinal studies and promote community ownership of studies. In particular, PCOR has potential to improve clinical care and outcomes in marginalized populations often excluded from research. Finally, dissemination strategies focused on diverse audiences help to increase the impact of research findings and build stakeholder networks that support subsequent research initiatives.
This course will introduce participants to principles and methods of stakeholder engagement using examples of existing urological PCOR initiatives across a variety of conditions (e.g., bladder cancer, urolithiasis, gender-affirming surgery, prostate cancer) and across the lifespan (i.e., children, adolescents and adults). Using these research initiatives as examples, faculty will discuss stakeholder engagement in research beginning from study design through research conduct, dissemination and implementation. Course faculty will provide perspectives on benefits and challenges of engagement, particularly in vulnerable patient populations. In the second half of the course, the course faculty will lead interactive small-group discussions with attendees to identify and discuss stakeholder engagement strategies within their research areas of interest.