Nova Scotia Health’s Research Ethics Board volunteers ensure safe and effective research in health research
National Volunteer Week is a great time to reflect on the expertise, wisdom and experience that volunteers in research bring to the health system in Nova Scotia.
Dr. Marie-Laurence Tremblay, manager of Nova Scotia Health’s Research Ethics Board, attributes its success to the board members, all of whom volunteer their time to support the integrity, safety and quality of research at Nova Scotia Health.
“The Nova Scotia Health Research Ethics Board is a diverse body of local volunteers with a range of expertise who review all human-related research projects within the Nova Scotia Health’s jurisdiction to ensure the studies meet the highest ethical standards to protect the rights, safety and well-being of each research participant,” explained Dr. Tremblay.
Members are tasked with reviewing each study for its scientific soundness and rational, risk versus benefit of the research, informed consent process, evidence of coerciveness, privacy protection and more.
The 94 members include physicians from various specialties, researchers, clinical research coordinators, nurses, pharmacists and lawyers, along with members of the public who provide a patient perspective that is critical to the ethical review of research studies.
Many of the physician and clinical volunteers work at Nova Scotia Health, dedicating their ‘free time’ to the review of study applications that come through the Research Ethics Board for approval.
One such volunteer is Stephanie Reidy.
Reidy works as a research coordinator with the Department of Rheumatology. She is the second person in her family volunteering with the Research Ethics Board.
“My mother was a volunteer with the former Capital District Health Authority Research Ethics Board – and she was the research coordinator for nephrology,” noted Reidy.
“I remember being in high school and seeing her prepare for the Research Ethics Board meetings, which she found so interesting.”
Following in her mother’s footsteps, she explained that volunteering with Nova Scotia Health’s Research Ethics Board is a rewarding way to give back to the health care community, and that she is surrounded by many incredible selfless volunteers.
Reidy noted that, “research patients are our greatest volunteers in health, and some participate in studies that might run for 20 years. They often do not see the benefits of the research but contribute to our collective knowledge around their disease. While they might benefit occasionally from the experience if they receive treatment as part of the study, we are the ones who really benefit from their selfless contribution to health and health research.”
As a practicing lawyer with a health sciences background, Jeanne Desveaux has volunteered with the Research Ethics Board for more than 10 years.
“Seeing the success of the Nova Scotia Health Research Ethics Board and value that the board brings to all areas of health research is deserving of our support,” noted Desveaux, who had been recruited as a volunteer by her then law professor who had also been a volunteer.
Providing the patient perspective to health research is integral in quality and safety, and Larry Thomas can attest to that, as he has been a volunteer member of the Research Ethics Board for almost 15 years.
As a community member, Thomas said that he “is continually inspired by just being in the presence of a group who are dedicated to ensuring that patients are properly looked after and that science is present in our health care system.”
Asking questions that clinicians and medical professionals may not have thought of adds to the richness of the review process.
When asked what advice he would give to future volunteers, Thomas, like his fellow board members, suggests that a volunteer on the Research Ethics Board should make sure they “reinforce that the equation of the research is fair to the patients involved as they are the vulnerable ones; ask yourself if this equitable and of value to the patient.”
When asked for her final thoughts on the volunteers who dedicate their time to the integrity and safety of research at Nova Scotia Health, Dr. Tremblay shared, “working with a group of volunteers is a very rewarding and rich experience. Our members are on the board not because they are forced to but because they find value and importance in the work that they do and because they want to be there. We have quite a few long-standing members and I think that speaks highly to the incredible leadership and support of our REB executive chair and co-chairs (past and present) and the dedication that our office staff shows as they work collaboratively with board members to protect the rights, safety and well-being our of research participants.”
If you are interested in learning more about volunteer opportunities with Nova Scotia Health’s Research Ethics Board, email ResearchEthics@nshealth.ca