Session: Patient and family engagement in clinical research
Addressing bioethical issues throughout the 10-Step Framework for Continuous Patient Engagement
Saturday, October 14, 2023
9:00 AM – 10:15 AM ET
Location: Atlantic (Third Floor)
The PATIENTS Program at the University of Maryland Baltimore developed a 10-Step Framework for continuous patients and stakeholder engagement throughout the research process. Since the seminal 2012 JAMA publication of the 10-Step Framework, we implemented the framework in dozens of clinical and translational studies. We also enhanced methods for advancing health equity and addressing barriers to patients and community engagement using the 10-Step Framework. Community-engaged research (CEnR) projects have lower reluctance of underrepresented communities to participate when they address bioethical issues. This session has two objectives: (1) delineate bioethical issues in CEnR at each step of the 10-Step Framework; and (2) propose approaches to address these issues using ethical deliberation. We propose an ethical deliberation approach based on three moments of deliberation: (1) broadening and deepening the understanding of the situation, (2) envisioning action scenarios, and (3) coming to a judgment based on the comparative evaluation of scenarios and shared decision making. Ultimately, addressing bioethical issues in community-engaged research enables research partnerships to bidirectionally engage community and researcher organizations to build trust and trustworthy partnerships and create shared values.
Claudia Baquet, MD, MPH, PHD – Affiliate Professor, Department of Practice, Sciences, and Health Outcomes Research (P-SHOR), PATIENTS Program/University of Maryland School of Pharmacy; Daniel Mullins, PHD – Professor, Department of Practice, Sciences, and Health Outcomes Research (P-SHOR), University of Maryland School of Pharmacy