A long-awaited national reporting system on organ donation and transplantation is expected to be in place by the end of the year, a spokeswoman for the Canadian Institute for Health Information says.

It would follow persistentefforts to address a lack of national data that has made it hard to optimize the allocation of organs, with further plans includinga proposal to co-ordinate efforts across provinces and territoriesto boost transplant rates. 

So far, the Canadian Institute for Health Information (CIHI) and Canada Health Infoway have developed a standardized data collection system for deceased donation. 

Data on living donationsand other aspects of the system are expected to be phased in later this year, CIHI spokeswoman Nicole de Guia said in an email to The Canadian Press.

“At this time, data submissions are expected to start by the end of 2024,” she said.

Standardized data collection is expected to help identify potentially missed donation opportunities and reasons why patients whose death was imminent were not referred to provincial organ donation organizations.

The system was a major goal of the Organ Donation and Transplantation Collaborative (ODTC), which Health Canada convened six years ago with doctors, researchers, patients as well as provinces and territories working to improve equitable access to potentially lifesaving treatment.

The collaborative, which excludes Quebec, also involves organ donation organizations and Canadian Blood Services, which has led the interprovincial system for donation and transplantation.

Health Canada spokesman André Gagnon said the joint effort has resulted in a proposed plan to increase organ donation and transplantation rates and that Canada’s deputy health ministers will consider it at a meeting in the spring.

He said the plan would provide transparency about how the donation and transplantation community will share responsibilities to benefit all regions. Each jurisdiction would continue operating its own organ donation and transplantation system.

“No jurisdiction can independently meet their patient needs, as they rely on interprovincial organ sharing and national leadership in the development of best practices,” Gagnon said in an email. 

Five provinces — British Columbia, Alberta, Manitoba, Ontario and Nova Scotia — have legislation mandating health-care teams to contact their organ donation organization when a patient has been identified as a potential donor because their death is imminent.

Matt Scaife of Kelowna, B.C., battled an autoimmune disease resulting from ulcerative colitis before he had a liver transplant in April 2000.

“I was really sick. I had no short-term memory. I had difficulty completing a sentence,” he said. “I was having difficulty with simple tasks. If I had to walk down a flight of stairs my brain would stop me and go, ‘Which foot should you move next?’ “

Scaife also worried that a liver may not be available for him. 

“You get kind of desperate. Your mind is kind of panicking, to be honest.”

The severity of his illness meant Scaife received a transplant in four and a half months. He believes the organ came from another province. When he had a second transplant 20 years later, he waited two years. 

“People gave a gift that literally saved my life twice,” said Scaife, who volunteers on behalf of BC Transplant to educate people about registering to become organ donors.

“Without the donor registry my life would have ended at 39 that first time. My daughter would have been 13 when I would have died.” 

In British Columbia, where health-care staff must contact BC Transplant about an impending death, an organ donation co-ordinator from the agency informs the hospital if the patient has registered either “yes” or “no” to donating their organs.

The co-ordinator then speaks with the patient’s family about providing informed consent for donation. Families or next of kin can override their loved one’s registered choice, according to BC Transplant.

Dr. Sam Shemie, a pediatric intensive care physician at Montreal Children’s Hospital who participated in the collaborative as medical adviser for Canadian Blood Services, said a national plan for organ donation and transplantation would clarify the roles and responsibilities of that agency and 11 provincial organizations.

“Organs cross provincial borders every day, and we need to be able to co-ordinate that. So, if a donor’s in Saskatchewan but a child in Montreal needs a heart, or a donor’s in Montreal and the child’s in Alberta, that type of matching across provincial borders is co-ordinated by Canadian Blood Services and their registries. But having a national health care agency trying to co-ordinate with the provinces sometimes can be difficult or challenging,” he said.

“Basically, it’s to evolve a system so it doesn’t really matter where the donor is or where the recipient is, that we should try to make it equitable access to donation, and access to transplants as well,” he said of the proposed plan.

Shemie has helped develop and lead clinical guidelines for both adult and pediatric intensive care teams to offer a dying patient’s family the chance to donate that person’s organs through “the most ethical, legal and medically appropriate manner” during “high-intensity tragic circumstances,” he said.

“For many families, it provides something good that comes out of something horribly bad — the ability to help others.”

A study published last March in the Canadian Journal of Anesthesia estimated that between 2016 and 2018, there were 354 missed transplants because health-care teams did not contact a provincial organ donation organization when end-of-life conversations were planned or occurred with a family or the referral came too late for a potential organ recipient to be assessed.

Lead author Dr. Samara Zavalkoff, medical director of patient safety at the Montreal Children’s Hospital, said only four of 11 provincial organ donation organizations could provide the requested data for the research and three of them were in provinces with mandatory referral legislation.

On average, a missed organ donor deprives three people of lifesaving treatment, she said. 

Staff in intensive care units and emergency rooms sometimes wrongly assume that a family will choose not to donate a patient’s organs based on their religion or ethnicity, Zavalkoff said, noting a colleague’s separate research findings.

However, she said referral is part of expected or best practice even in provinces where hospitals are not legally obligated to call an organ donation organization.

Missed donation opportunities should be categorized as critical patient safety events that cause preventable harm to patients on transplant waiting lists and deny families a donation opportunity when their loved one’s life could not be saved, Zavalkoff said.

“It’s a simple message, and not the way people typically think of it,” she said of equating missed donations to medical errors that are documented and go before a review board.

National, standardized data collection would allow measurement of missed or untimely identification and referral of potential organ donors, said Zavalkoff, adding the collaborative’s work will help advance that objective.

“Without this data there’s no way to plan and monitor improvement initiatives to reduce it,” she said of the preventable harm to patients and families.

The latest CIHI data from 2022 shows that 2,866 organ transplants were performed in Canada, 3,777 people were waiting to receive a transplant and 270 died on the wait list.

Among those waiting for organs that year, 2,813 were on the list for kidneys, 517 were waiting for a liver, 133 needed a heart and 352 needed a lung.