Research Ethics Boards and Patient Partnership

Back in December 2020, Jennifer moderated a panel for Child-Bright titled "Roles and Relationships: Ethical Considerations Related to Involving Children and Parents in Patient-Oriented Research". Child-Bright and the panelists generously agreed to let us use 'tape' from that session to explore some of the themes we thought our listeners would find especially interesting. (The panelists are: Elizabeth Stephenson, Franco Carnevale, Gillian Backlin, Antonia Palmer, Thierry Lacaze-Masmonteil. Profiles below.)

In this episode, Jennifer and Emily pick up one of the discussion threads to consider whether there might be a role for Research Ethics Boards (REBs) in supporting meaningful patient partnership.

(The video recording of the original Zoom event is openly available. You can watch it here. In the session we covered so much more than we were able to address!  It's not required in order to enjoy this episode, but we do encourage everyone to watch.)

[download transcript]

Mentioned in this episode:

• Roles and Relationships: Ethical Considerations Related to Involving Children and Parents in Patient-Oriented Research
• Child-Bright Network
• Ethics Guidance for Developing Partnerships with Patients and Researchers
• The Canadian Collaboration for Child Health: Efficiency and Excellence in the Ethics Review of Research (CHEER)
• Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans – TCPS 2 (2018)

Reading that challenges common understandings about the role of REBs:

• The Ethics Rupture: Exploring Alternatives to Formal Research-Ethics Review
• How did we ever get into this Mess? The Rise of Ethical Regulation in the Social Sciences
• Regulating Creativity: Research and Survival in the IRB Iron Cage
• Against Research Ethics Committees
• "We need more critical thinking in clinical bioethics if patient autonomy is what we seek"

Panelist Profiles:

• Elizabeth Stephenson is a Professor of Pediatrics at the University of Toronto and the Section Head of Cardiac Electrophysiology at The Hospital for Sick Children. Her research focus on electrophysiology has led to clinical investigations in cardiac resynchronization- and implantable defibrillator therapies. Additionally, she serves as the Chair of the SickKids’ Research Ethics Board.
• Franco Carnevale is a nurse, psychologist and clinical ethicist with research interests in pediatric ethics. In addition to a number of academic appointments at McGill, he is the founder and principal investigator for VOICE (Views On Interdisciplinary Childhood Ethics) to advance knowledge and practices relating to ethical concerns in childhood.
• Gillian Backlin is a technical writer, an active member of CHILD-BRIGHT’s National Youth Advisory Panel, and a Patient and Family Ambassador Liaison  at the  BC Children’s Hospital’s Sunny Hill Health Centre.
• Antonia Palmer is actively involved in the realm of pediatric oncology. In addition to being the co-founder of the Advocacy for Canadian Childhood Oncology Research Network, she founded Neuroblastoma Canada, and is a board member for Childhood Cancer Canada. She also chairs the Patient and Family Advisory Committee of the CHEER (Canadian Collaboration for Child Health: Efficiency and Excellence in the Ethics Review of Research) initiative which aims to streamline and improve the research ethics review process to enhance and expedite child health research across Canada.
• Thierry Lacaze-Masmonteil is child health and wellness researcher. He is a Professor of Pediatrics at the university of Calgary and is the section head of Neonatology at the Cumming School of Medicine. Additionally, he serves as the scientific director of MICYRN - the Maternal Infant Child Youth Research Network and is a co-principal investigator on the aforementioned CHEER initiative.