{"id":636,"date":"2026-01-19T20:23:02","date_gmt":"2026-01-19T20:23:02","guid":{"rendered":"https:\/\/cmblog.neuroscience.queensu.ca\/?p=636"},"modified":"2026-01-19T20:32:01","modified_gmt":"2026-01-19T20:32:01","slug":"co-creation-stories-start-with-people-not-the-problems","status":"publish","type":"post","link":"https:\/\/cmblog.neuroscience.queensu.ca\/co-creation-stories-start-with-people-not-the-problems","title":{"rendered":"Co-Creation Stories: Start with People, Not the Problems"},"content":{"rendered":"\n

On the Connected Minds website<\/a>, the word \u201cco-creation\u201d is seemingly everywhere. Connected Minds gives you a clear starting point for understanding co-creation, including a definition: a collaborative approach to research wherein researchers work directly with the people, communities, and sectors affected by an issue to jointly define problems, design and test ideas, and evaluate outcomes. The website also includes a step-by-step guide, developed from an extensive literature review that walks researchers through i) understanding the foundations of co-creation<\/a>, ii) a practical how-to guide to implement it<\/a>, and iii) worksheets to support real-time collaboration, decision-making, and evaluation.<\/a><\/p>\n\n\n\n

On paper, co-creation is important, and it doesn\u2019t take a genius to understand why. Collaboration pushes research forward. Diverse voices and perspectives broaden how problems are framed, and consulting with end-users can only make our solutions better. So yes, co-creation sounds great. But in practice, is it worth the extra time, discomfort, and the added coordination in a research world that rewards speed, efficiency, and productivity?<\/p>\n\n\n\n

If you are like me, it isn\u2019t enough to just read about the definition of co-creation or skim a how-to guide. You also need real-life proof of why it is worth going the extra mile to reach out to community members, researchers in other disciplines, and experts from all over. To understand why co-creation is so important, I spoke to two Queen\u2019s researchers, Dr. Claire Davies and Dr. Gavin Winston. Both have made co-creation a foundational part of how they do research.<\/p>\n\n\n\n

Starting with people changes the problem<\/strong><\/p>\n\n\n\n

Dr. Claire Davies<\/a>, Professor in Mechanical and Materials Engineering, spoke to me about a time she brought students who were developing robotic sensors and exoskeletons for stroke rehabilitation. As she recalls, after her students had met the patients, \u2018they walked out of the clinic at the end and said, \u201cthose people don\u2019t operate anywhere near what they do on YouTube. I am going to have to redesign my sensors.\u201d\u2019<\/p>\n\n\n\n

Dr. Gavin Winston<\/a>, Professor in the Department of Medicine, echoes a similar sentiment from a clinical perspective. He reflects on early co-creation workshops with people living with epilepsy, he notes that \u201cone of the overwhelming things was that people really liked the concept and felt that it would be useful.\u201d In both cases, talking to end users shaped how the technology is built, but more importantly, it reshapes how researchers perceive problems.<\/p>\n\n\n\n

And this is where a major problem emerges: do we, as researchers, actually understand the problem at hand? We read the papers, do literature reviews, and make assumptions, but do we slow down enough to actually listen?<\/p>\n\n\n\n

Co-creation slows research down, but that\u2019s the point<\/strong><\/p>\n\n\n\n

Research is built on fast-paced outputs and productivity.<\/a> It\u2019s a race against time for the next grant, the next position, and the next project. Co-creation interrupts that process and slows it down.<\/p>\n\n\n\n

Dr. Davies was recently awarded a Team Grant<\/a> for her project, When People Talk, Listen Completely<\/em>, which focuses on developing AI-driven communication technologies, educational tools, and workplace strategies to improve employment access for Canadians with speech impairments. Across her work, she has noticed repeatedly that, \u201cninety percent of engineering is designing, and people neglect to actually talk to clients [during] the design process.\u201d<\/p>\n\n\n\n

\"\"
When People Talk, Listen Completely<\/strong><\/strong>: Led by Dr. Claire Davies (Queen\u2019s University) and co-led by Dr. Shital Desai (York University)<\/a>, this team is developing AI-driven communication technologies, educational tools, and workplace strategies to improve employment access for Canadians with speech impairments.<\/strong><\/figcaption><\/figure>\n\n\n\n

Through Connected Minds funded co-creation workshops with people who have speech impairments, Dr. Davies and her team learned how varied communication can be for this group of people. For instance, some participants relied entirely on speech-generating devices, others used vocal utterances which required time and familiarity to understand, and some participants needed interpreters.<\/p>\n\n\n\n

Sometimes, there were long gaps while participants typed out their answers. At first, she thought these pauses would be labelled as inefficient since they resulted in delayed responses. However, she realized that it was important to deliberately leave them in. As she recalled, \u201cInitially I thought, well let\u2019s take out all those huge gaps where people are typing their answers. But then I realized that was the most important thing for people to learn, that you have to sit there and you have to wait and you have to listen and you don’t interrupt\u2026 you just have to be quiet and patient.\u201d <\/p>\n\n\n\n

Ultimately, it became about letting people communicate at their own time, pace, and comfort level. The approach she and her team took forced researchers to slow down, wait, and listen completely. These workshops were then thematically analyzed and brought back to participants for validation, directly informing her grant application and future research themes. For Dr. Davies, there is a clear takeaway: \u201cthe biggest thing is going in with no preconceived conceptions of what you think needs it, [so having] no preconceived ideas of what you\u2019re expecting out of it.\u201d Involve people in the beginning and throughout the research process, not just at the end.<\/p>\n\n\n\n

Consultation with end-users expands the research problem<\/strong><\/p>\n\n\n\n

Dr. Winston has a similar experience. He was also awarded a Team Grant<\/a> for his project, Wearable EEG for Personalized Epilepsy Management<\/em>, which focuses on developing a smart, wearable electroencephalogram (EEG) device designed for clinical accuracy, long-term comfort, and ethical use in everyday environments. His team aims to bridge the gap between short, clinic EEG recordings and long hospital stays by developing a wearable EEG device that provides clinical-quality data, long battery life, and full electrode coverage that can be used independently at home. At first, the research problem may sound like a technical challenge, but it becomes something much bigger.<\/p>\n\n\n\n

\"\"
Wearable EEG for Personalized Epilepsy Management<\/strong><\/strong>: Co-led by Dr. Gavin Winston (Queen\u2019s University) and Dr. Hossein Kassiri (York University)<\/a><\/strong>, this team is developing a smart, wearable electroencephalogram (EEG) device designed for clinical accuracy, long-term comfort, and ethical use in everyday environments.<\/strong><\/figcaption><\/figure>\n\n\n\n

Involving people in the research process immediately expands the scope of the problem being addressed beyond medicine or engineering alone. Once an EEG wearable is introduced into the home, questions of ethics, legality, accessibility, privacy, and caregiver impact become as important as the hardware of the device. Thus, it becomes clear that what works in a controlled hospital environment doesn\u2019t always work into someone\u2019s daily routine.<\/p>\n\n\n\n

Addressing these questions requires an interdisciplinary team that brings together clinicians, engineers, ethicists, lawyers, community organizations, patients, and caregivers. Dr. Winston and his team heard directly from participants who would eventually use the technology. For instance, \u201cthings such as comfort were brought up as being critical if [the device] was going to be used.\u201d Beyond comfort, participants also discussed usability and support: \u201cThey felt there would need to be clear availability of technical support\u2026 or at least training so they know how to use such a device.\u201d<\/p>\n\n\n\n

As Dr. Winston points out, \u201cthere\u2019s another large part of the project which looks at all the ethical and legal implications of such a device\u2026 if we\u2019re recording data in a home environment, what are the security implications of that?\u201d Once people are involved, the problem is no longer about engineering a better device. It\u2019s also about understanding the context in which it will be used. Starting with people means that no single discipline can fully understand the problem on its own.<\/p>\n\n\n\n

Conclusion<\/strong><\/p>\n\n\n\n

For me, the value of co-creation has become clear, not because it sounds good on a website, but because of what it forces researchers to think about. Starting with people changes what we think the problem is, slows us down in ways that enhance our solutions, and makes it impossible to work by ourselves.<\/p>\n","protected":false},"excerpt":{"rendered":"

On the Connected Minds website, the word \u201cco-creation\u201d is seemingly everywhere. Connected Minds gives you a clear starting point for understanding co-creation, including a definition: a collaborative approach to research wherein researchers work directly with the people, communities, and sectors affected by an issue to jointly define problems, design and test ideas, and evaluate outcomes. 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