Ethelo Engagement to Inform Canada’s National Diabetes Framework
When the Canadian Government passed an act (Bill C-237) to establish a National Framework for Diabetes in June 2021, it imposed a tight deadline for public engagement. The Minister of Health was required to table a report in Parliament within one year of the bill receiving Royal Assent, meaning that capturing public input would be essential but also time-sensitive. Involving citizens and people with a lived experience of diabetes was a top priority to ensure the final framework accurately reflected the real-world challenges and ideas of those affected.
However, public consultation was delayed by the 2021 election, compressing the timeline even further. Traditional engagement platforms could not feasibly gather broad-based feedback and produce real-time, actionable insights at the speed required. Instead, the Public Health Agency of Canada partnered with the SFU Morris J. Wosk Centre for Dialogue and the Ethelo engagement platform to reach more people faster, providing “a much stronger voice of people with lived experience than we got in either our key informant interviews or our online dialogues,” as Dr. Diane T. Finegood (SFU Professor and Fellow) explains.
884 people
participated in the engagement
91% of respondents prioritized access to medicine, medical devices, and financial support, followed by better tools for self-management (80%) and improvements in care delivery (70%
Professor
Health Agency of Canada to develop a comprehensive plan that included:
These activities aimed to increase the Public Health Agency of Canada’s understanding of the challenges, priorities, and recommendations of people living with or impacted by diabetes. With the parliamentary deadline looming, the team needed a tool that could deliver real-time, transparent results to ensure participant feedback could quickly inform the national framework. According to Dr. Finegood, “that real-time transparency was very important because we knew we couldn’t finish the process and have the reports fast enough to meet the needs of the Public Health Agency. If the input of participants was going to influence the framework, then they would have to be able to see the results as they were coming in.”
Adapting the discussion guide from the dialogue sessions for the online platform, Ethelo provided both English and French versions of the survey. Over 800 people took part, contributing more than 5,000 comments during the five weeks it was open. These comments validated themes from earlier interviews and dialogues but also revealed new insights about how Canadians living with or affected by diabetes truly felt. Reflecting on this breadth of feedback, Dr. Finegood notes that “the comments were incredibly rich and the fact there were so many helped us validate some of the things we’d heard in the dialogue.”
Ethelo’s design allowed participants to see and respond to others’ comments, facilitating a dynamic dialogue rather than a static questionnaire. The project team—responsible for proposing elements of the national framework—could access evolving results in real time, enabling immediate integration of the findings. Dr. Finegood underscores the importance of this feature: “I think it was very valuable that people could see other people’s comments, could see what they rated highly, could look at the distribution. That immediate feedback to the participant provides them with valuable insight.”
To manage the volume of feedback, Ethelo’s team analyzed a representative sample of 2,000 comments, categorizing them into key themes such as access to interprofessional health care, diabetes awareness and education, lifestyle-related stigma, and differentiating between Type 1 and Type 2 diabetes. This analysis, Dr. Finegood explains, “reinforced the importance to people with Type 1 to not talk about diabetes but to talk about Type 1 and Type 2 diabetes as very different diseases. It’s not one thing,” underscoring the need to distinguish the two conditions when discussing stigma, prevention, and care.
By the end of the engagement, about 55% of respondents reported having personal experience with diabetes or caring for someone who did—significantly amplifying the lived-experience voice in the final recommendations. Healthcare professionals, researchers, advocates, and private sector stakeholders also participated, creating a comprehensive view of differing priorities. As Dr. Finegood puts it, “theming of those comments was helpful in building the narrative in the report and understanding where the narrative came from. i.e. people with a lived experience had a particular point of view.”
Key priorities identified through the survey included prevention, care delivery, self-management, research, and access to medical and financial support. Notably, 91% of respondents prioritized access to medicine, medical devices, and financial support, followed by better tools for self-management (80%) and improvements in care delivery (70%). Real-time data allowed the framework’s authors to incorporate these insights while the survey was still active, ensuring the voices of participants helped shape the final report. “There is a strong similarity between the content of our what-we-heard report and what went into the framework…The report has had an impact on the framework,” remarks Dr. Finegood.
Finally, the wealth of data gathered offers a rich foundation for future policy and advocacy efforts. “There is such a richness of data that was collected that we don’t want to lose it. We need to determine how to summarize this in ways that will be useful in future and used for the next stage of engagement,” notes Dr. Finegood.
By leveraging Ethelo’s real-time transparency and capacity to capture extensive qualitative feedback, the project team successfully engaged a broad cross-section of Canadians in under five weeks. In doing so, they met legislative timelines, incorporated the lived experiences of those most affected by diabetes, and informed a national framework with concrete, data-driven insights. A summary of this engagement can be found
This case study shows how innovative engagement platforms, combined with thoughtful dialogue guides and structured analysis, can yield meaningful public input—even under tight deadlines—and ensure that key policy decisions are grounded in the voices of those they aim to serve. A summary of the overall engagement can be found on the Government of Canada’s website, describing all the phases of the engagement, including Ethelo’s contributions.
“Ethelo was very valuable because it gave us a much stronger voice of people with lived experience than we got in either our key informant interviews or our online dialogues.”
– Dr. Diane T. Finegood, SFU Professor and Fellow
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