A Program of Research to Evaluate the Impact of Deceased Organ Donation Legislative Reform in Nova Scotia: The LEADDR Program

Abstract

Background. This is the first time deemed consent, where the entire population of a jurisdiction is considered to have consented for donation unless they have registered otherwise, will be implemented in North America. While relatively common in other regions of the world-notably Western Europe-it is uncertain how this practice will influence deceased donation practices and attitudes in Canada. Methods. We describe a Health Canada funded program of research that will evaluate the implementation process and full impact of the deceased organ donation legislation and the health system transformation in Nova Scotia that includes opt-out consent. Results. There is a need to evaluate the impact of these changes to inform not only Nova Scotia and Atlantic Canada, but also other provincial, national, and international stakeholders. Conclusions. We establish a rigorous academic framework that we will use to evaluate this significant health system transformation.

A Qualitative Content Analysis of Comments on Press Articles on Deemed Consent for Organ Donation in Canada

“…Lawmakers should focus on better understanding the diverse views and needs of the public and aim to build collective trust around organ donation. Multifaceted interventions and infrastructure should then be codesigned in partnership with community stakeholders, work that is already in progress in Canada (26).…”

Analyzing online public commentary responding to the announcement of deemed consent organ donation legislation in the Canadian province of Nova Scotia

“…As research has detailed how presumed consent is not a panacea for low donation and transplantation rates [ 7 , 8 ], assessing the various ways in which donation and transplantation procedures can be improved are paramount, including an evaluation of the potentially valuable implementation of presumed consent. Part of this evaluation [ 32 ] needs to focus on those who opt out and their reasons for doing so. In being the first jurisdiction in North America to pass presumed consent legislation, the province of Nova Scotia is providing a valuable learning and evaluation opportunity for other provinces in Canada as well as other jurisdictions internationally.…”

Online user comments responding to deemed consent organ donor legislation in Nova Scotia: a divided public or a few loud voices?

“…As research has detailed how presumed consent is not a panacea for low donation and transplantation rates, 7,8 assessing the various ways in which donation and transplantation procedures can be improved are paramount, including an evaluation of the potentially valuable implementation of presumed consent. Part of this evaluation 30 needs to focus on those who opt out and their reasons for doing so. In being the first jurisdiction in North America to pass presumed consent legislation, the province of Nova Scotia is providing a valuable learning and evaluation opportunity for other provinces in Canada as well as other jurisdictions internationally.…”