Academic and Research Skills
Advocacy
Clinical Bioethics
Clinical Research
Critical Care
Diversity, Equity, and Inclusion
Neonatology
Annie Janvier, MD, PhD (she/her/hers)
Profesor of Pediatrics and Clinical Ethics
University of Montreal
Montréal, Quebec, Canada
Brett Manley, MBBS (Hons.), PhD
Neonatologist
The Royal Women's Hospital, Melbourne, Australia
Parkville, Victoria, Australia
Session
Description: In pediatric research today, it is essential to involve parents and patients in the design, conduct, and reporting of research. Stakeholders now routinely participate in formulating research agendas, designing research protocols, analyzing results, and speaking at professional conferences. Often, however, their roles are unclear and, as a result their effectiveness may be suboptimal. Questions arise about how to resolve disagreements between parents and research methodologists, how to (and how much to) compensate them, and how to clarify their responsibilities and differentiate those from those of other research collaborators. If a parent/patient advisory board recommends a consent methodology, but clinicians, IRBs, ethicists, disagree, how can these disagreements be resolved? When a non-inferiority trial demonstrates that two interventions are statistically equivalent but parents have strong preferences, are they really equivalent? How should such differing conclusions be described in papers or explained to journalists?
This panel will offer practical recommendations to improve these partnerships. We focus on best practices for recruiting parents and defining their role in each research project. Our interdisciplinary panel includes researchers, ethicists, and a parent who is part of parent advisory boards. We offer examples of trials where parents’ suggestions led to changes in the consent process and in the types of data that were collected and analyzed. Specific issues include dealing with bereaved parents, including children on IRBs, and co-authoring papers for publication. Our goal is to make sure that the voices of all stakeholders are heard and respected to improve pediatric research.
Speaker: Annie Janvier, MD, PhD (she/her/hers) – University of Montreal
Speaker: Rebecca L. Pearce, BSc, MSc, BEd (she/her/hers) – St Justine Hospital (resource parent)
Speaker: Eduard Verhagen, MD, JD, PhD (he/him/his) – University Medical Center Groningen, dept of pediatrics
Speaker: Brett J. Manley, MBBS (Hons.), PhD – The Royal Women's Hospital, Melbourne, Australia
Speaker: John D. Lantos, MD – JDL Consulting