Supporting Efficient & Effective Governance of Organ Donation Across Canada

Organ transplants are one of the greatest advances in modern medicine, replacing a failing organ with a healthy one from a living or deceased donor. People may need an organ transplant to treat a variety of conditions, from lung transplants due to cystic fibrosis, small intestine transplants due to Crohn’s disease, or kidney transplants due to lupus or diabetes.

Nearly 3000 organ transplants were performed in Canada in 2021, a 23% increase from a decade earlier. These are vital, life-saving operations — but they rely on the generosity of organ donors, who tend to be in short supply. At any given time, there are upwards of 4,000 Canadians waiting to receive an organ transplant, and each year, more than 250 die waiting. 

In 2018, Health Canada launched the Organ Donation and Transplantation Collaborative (ODTC): a multi-stakeholder collaboration with the mandate of improving Canada’s organ donation systems, achieving better patient outcomes, and increasing the number and quality of successful transplantations. The ODTC is made up of representatives from Canada’s provinces and territories, Canadian Blood Services, and patients and their families, as well as clinical and administrative stakeholders and researchers. 

Every stakeholder in the organ donation and transplantation (ODT) system has their own unique perspective on the problems at hand. It’s important for all of these voices to be at the table — but as the structure of any committee becomes more complex, it becomes easier for decision-making to get bogged down by opposing viewpoints.

The University of Ottawa played a major role in wrangling this complexity. Over the course of 3 years, they took on the foundational work of mapping out the overall structure of the Organ Donation and Transplantation governance framework: a pan-Canadian system that fosters cooperation and interoperability. This framework will play a crucial role in maximizing the ODT system’s efficiency and effectiveness. 

Health Canada approached The Decision Lab to help refine the framework. We used established, evidence-based techniques to help the ODT Steering Committee better structure their decision-making processes, removing possible sources of bias and interference to finally arrive at a governance model that worked for everybody.

In any project that involves so many diverse stakeholders, the main challenge is navigating the parties’ diverse needs and interests. TDL’s main role was to facilitate structured conversations between all the parties involved in the ODT Steering Committee, and to steer the collective towards a shared set of priorities and objectives. 

We collaborated with the organization’s Steering Committee to get a representative insider perspective of the organization and the hurdles it was facing. We conducted a survey to understand the issues in ODT Governance as perceived by the Steering Committee, analyzed their qualitative feedback, and synthesized it into a set of 6 clearly defined problems to be addressed. We also worked with the Steering Committee to brainstorm a range of solutions for each of them.

Now came the main challenge: bringing the ODTC’s many stakeholders into alignment about which solutions should be adopted. Unstructured approaches to this kind of negotiation are almost always ineffective: not only are people generally unlikely to waver from their established preferences, this kind of process also invites many kinds of bias into the equation. (To give just one example, a pre-existing animosity between two stakeholders may lead them to systematically reject each other’s suggestions, regardless of actual merit.) 

To get around this, we put the Steering Committee through an exercise known as a discrete choice experiment (DCE). A DCE is a technique wherein people make a series of choices between two options at a time. This lets us examine which specific variables influence their decisions, and how. 

By narrowing the focus to just two options at a time, a DCE reduces information overload and other sources of cognitive bias. It also lets us observe how people actually respond when forced to make a decision. This is important because research has shown that people’s real-world behavior often diverges from their stated preferences.

In this case, ODTC stakeholders were faced with two potential governance changes at a time, and were asked to pick the one that they would prefer to implement. After all our participants completed several rounds of choices like this, their answers were anonymized and used to calculate a single numerical score for each solution. Within each core problem, the potential solution with the highest score was crowned the winner.

Our DCE gave us a clear, objective ruling on how the ODT’s governance system should be modified. But it didn’t produce perfect agreement — and in any sector, it’s crucial to ensure that all stakeholders can have their voices heard. To ensure that the Steering Committee members were in alignment, we followed up the experiment with a dotmocracy workshop. 

Dotmocracy is a qualitative exercise wherein stakeholders take turns reallocating dots (i.e. points) previously assigned to each solution during the DCE. This provides everyone with an opportunity to refine the final plan, to bring it into better alignment with their priorities and values. Over the course of a workshop facilitated by TDL, ODTC members continually took turns adjusting the model, iteratively bringing it closer and closer to a final plan that represented the committee’s diversity of viewpoints.

Our governance framework refinement led to several key changes that aimed to reduce primary issues of concern, while simultaneously increasing the efficiency, effectiveness, and justice of the organization. 

Organizational governance is no easy feat. The bigger the organization, and the more stakeholders participating in it, the more difficult it is to find methods of governance that adequately address everyone’s values and needs. Through our work with Health Canada and the ODTC, TDL is proud to have helped develop a more efficient and effective governance framework for organ donation across the country.