Organ donation and transplantation collaborative
Organ donation rates have been improving in Canada but it is clear that there is more work to be done. Every year, hundreds of Canadians die while waiting for an organ transplant. With over 4,300 people in Canada waiting for a transplant right now and only a fraction of Canadians registered as donors—the need is critical.
The Government of Canada is strongly committed to improving the organ donation and transplantation system in Canada. Health Canada has been leading an initiative called the Organ Donation and Transplantation Collaborative (the Collaborative) in close collaboration with provinces and territories, Canadian Blood Services (CBS), patients, families and stakeholders involved in organ donation and transplantation (ODT).
The Collaborative’s goal is to develop concrete and actionable options to improve organ donation and transplantation performance that meet Canadians’ needs and improves patient outcomes.
This initiative is informed by consultations with a wide range of experts, including clinicians, government officials, Canadian Blood Services, research organizations, organ donation organizations, transplant programs, patient and family groups, and other key stakeholders. The Collaborative has summarized these stakeholders’ views in a synthesis report entitled What We Heard: Stakeholder Perspectives on the Path Forward (available upon request).
Following stakeholder consultations, Health Canada, in collaboration with Canadian Blood Services and the Provincial Territorial Blood Liaison Committee, launched a first workshop in November 22-23, 2018 to expand on the priority actions identified in the consultations. At the workshop, over 60 diverse stakeholders (many of whom participated in the consultations) deliberated on how to achieve better organ donation and transplantation outcomes for Canadians and identified priority themes for action for the next two to five years.
Following the Workshop, eight Working Groups were established to advance priorities, including addressing gaps in their respective areas of focus.
- Decision-Making and Accountability
There is a need for a pan-Canadian mechanism that will facilitate organ donation and transplant decision-making, strengthen accountability and monitor system progress. Creating an accountability framework will help ensure that Canadians have access to an organ donation and transplantation system that responds to their needs and those of their families.
This Working Group is mapping the current organ donation and transplantation system, identifying roles, responsibilities and gaps across jurisdictions, organizations and stakeholders. The intention is to develop a consensus-based accountability framework and potential pan-Canadian governance models to both increase access to transplantation and improve transplant outcomes.
- Data System for Organ Donation and Transplantation
Comprehensive, consistent and standardized data are essential to inform good decisions, support health care professionals in their practices and achieve better outcomes in organ donation and transplantation. Currently, Canada lacks such a data system for organ donation and transplantation.
The Working Group’s priority is the creation of a pan-Canadian data system that will support decisions from organ donation to transplantation to avoid missed opportunities and improve patient care. In addition, pan-Canadian reporting on donor audits and high quality standards will improve organ donation and transplantation system performance.
- Deceased Donation
Canada has made solid progress in raising its deceased organ donor rate. However, there is a persistent shortfall between the demand for organs and the available supply of organs to meet the needs of Canadian patients. Too often, health care professionals are not adequately equipped to ensure that potential organ donors are recognized or identified.
The Working Group focuses on increasing the number of potential organ donors to avoid missed donation opportunities through the development of policies, procedures and practices that will maximize donor identification in hospitals and referral to transplantation services across Canada.
Organ donation services and access to transplantation services vary significantly across the country. There is also variability in post-transplantation care across communities.
The Working Group’s priorities are identifying underserved populations, improving patients' access to post-transplantation care in remote communities, and identifying optimal practices in regional organ recovery according to population needs and clinical considerations.
- Inter-Provincial Organ Sharing
Canada is not maximizing its inter-provincial organ sharing potential. This results in missed opportunities for patients in need of an organ donation and an increase of patients on a waiting list for a transplantation which can result in deaths.
The Working Group’s focus is on agreements between provinces and territories, starting with existing agreements, to help reduce the ever-growing gap between the supply and demand for transplantable organs. This will also improve the efficiency and effectiveness of organ sharing process.
- Living Donation
The living donor rate is decreasing in Canada over the years even though research results indicate that living organ donation may offer better health outcomes.
For the Working Group, this priority involves articulating the benefits of and barriers to living donation as well as the steps needed to increase its use as a preferred treatment option.
- Public and Professional Awareness and Education
Despite a willingness to donate their organs, many Canadians don’t register their intention. Another challenge rests with supporting the family through the organ donation process. In this context, health care professionals play a critical role in supporting the families and need to be continuously supported by training and tools to perform this role adequately.
The Working Group is focusing its attention on identifying and implementing ways to encourage using different approaches (e.g. awareness campaigns, social media, etc.) that reach a diversity of communities and age groups. A second priority area is the identification of ways to support health care and related professionals and families throughout the organ donation process.
- Research, Innovation and Quality Assurance
Evidence-informed decision-making in organ donation and transplantation depends on having quality research data. Yet researchers need to be brought together to define patient-centred priorities and consider the data needs of the broader Organ Donation and Transplantation Collaborative. All Working Groups have an interest in and a need for research to inform and support their respective priorities.
The Working Group’s priority is to develop and advance a long-term sustainable research agenda for organ donation and transplantation. It will link research to policy and patient outcomes while creating an open research environment that builds on lessons learned.
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