Nova Scotia researchers lead the way for innovative organ and tissue donation reform

Nova Scotia made history in 2019 by becoming the first jurisdiction in North America to pass the Human Organ and Tissue Donation Act (HOTDA). 

This legislation changed Nova Scotia’s policy on organ and tissue donation to a deemed consent model. Instead of opting-in to donate organs and tissues, individuals now have to opt-out of the donation system. 

This legislation came into effect at the beginning of 2021, giving hope to those awaiting life-saving transplants. 

It also gave researchers at Nova Scotia Health an opportunity to thoroughly investigate and evaluate the impact of the legislation, its implementation, and public perception.

Two years ago Health Canada awarded Nova Scotia Health $1.14 million dollars to gather evidence to inform legislative strategies aimed at improving deceased organ donation and evaluate the impact of Nova Scotia’s deemed consent legislation. 

The study, known as Legislative Evaluation: Assessment of Deceased Donation Reform (LEADDR), is led by Dr. Stephen Beed, medical director, Legacy of Life and Critical Care Organ Donation at Nova Scotia Health, and Dr. Matthew Weiss, medical director of Organ Donation at Transplant Québec. 

LEADDR is also supported by Nova Scotia Health’s vice president of Research, Innovation and Discovery and chief nurse executive, Dr. Gail Tomblin Murphy.

“Nova Scotia’s donation system is undergoing a transformative change with the passage of the Human Organ and Tissue Donation Act,” said Dr. Beed. “The LEADDR Program will study the implementation of this change – with the expectation that health care will improve for patients in Nova Scotia and lessons learned can influence decision making in other parts of Canada.”

The LEADDR study is split into three main activities that will give researchers a thorough understanding of Nova Scotia’s HOTDA legislation    . 

The first activity, led by Dr. Weiss, and Dr. Kristina Krmpotic, donation physician, Legacy of Life and Critical Care Organ Donation at Nova Scotia Health, involves defining and measuring the impact of the legislative reform. 

This phase of the project will give researchers an understanding of the baseline performance of organ donation and the ability to understand changing consent, identification and referral rates throughout the course of its implementation. 

“This careful research will ensure that the lessons learned in Nova Scotia will make the biggest impact possible,” said Dr. Weiss. 

The second activity of the LEADDR study is to understand the deemed consent legislation that exists internationally, such as in Belgium and Spain. 

Dr. Christy Simpson, bioethics consultant at Canadian Blood Services and PhD. candidate Amanda Lucas, clinical nurse specialist at Shared Health Manitoba, work with a dedicated team to oversee this. 

Together, they are leading quantitative and scoping reviews of existing deemed consent legislation in order to consider the ethical, legal and logistical implications of HOTDA in Nova Scotia. 

“Recognizing that there are important ethical and legal considerations with this type of legislative change, this project provides an opportunity to examine these issues within the Canadian context,” said Dr. Simpson. 

“This includes examining existing national and international data to assess public perceptions of deemed consent,” Lucas added.  

Lastly, the third LEADDR activity, led by Dr. Stephen Beed and Dr. Robin Urquhart, affiliate scientist at Nova Scotia Health, focuses on understanding public and professional attitudes about the deemed consent legislation. 

Through a series of polls, interviews, and conversations with patients, families, and different health care workers, Dr. Beed and Dr. Urquhart are analyzing public and health care worker opinions on the HOTDA legislation in Nova Scotia. They are committed to understanding the opinions and knowledge of underrepresented populations and are actively incorporating minority groups into their research. 

“We have a chance to take what is a very good system and make it what I hope will be the very best in the country,” said Dr. Beed.

The benefits of the LEADDR study are numerous. 

It will give Nova Scotians access to a robust and evidence-based organ and tissue donation system. This will improve the lives of many Nova Scotians by reducing transplant wait times and increasing efficiency within the health care system. 

As well, LEADDR will provide valuable insights for other provinces and territories planning to introduce deemed consent legislation. The lessons learned about implementation, execution and public perception of the HOTDA legislation in Nova Scotia will guide policy and decision makers in Canada and around the world. 

“I am convinced that LEADDR will generate important knowledge that provincial, national and international stakeholders will be able to use to inform and implement donation and transplantation legislative changes,” concluded Dr. Mélanie Dieudé, executive director, Canadian Donation and Transplantation Research Program. 

To learn more about the HOTDA legislation, please visit: https://novascotia.ca/organ-and-tissue-donation-changes/ 

For updates on the LEADDR study, please visit: https://www.cdha.nshealth.ca/legislative-evaluation-assessment-deceased-donation-reform-leaddr-program

For questions related to the LEADDR study, please contact leaddr@nshealth.ca