The Research and Family Liaison: Enhancing Informed Consent
Abstract
Institutional review boards primarily focus on the content of written materials to ensure adequate informed consent. However, no consensus exists regarding how best to present research information to families to ensure that they comprehend it and to facilitate their voluntary participation throughout a research study. Our institution chose to address these challenges by creating a new position—the research and family liaison—whose primary focus is on assisting families during the informed consent process for pediatric research, rather than on institutional and regulatory compliance. The research and family liaison aids this process by directly engaging with families, providing interactive education for staff, and developing tools to improve communication between researchers and families