On a day when the high-rises of East Toronto funnelled the wind through their passages, my colleague, a community health ambassador lead at TNO – The Neighbourhood Organization (TNO), and I, a researcher at Michael Garron Hospital (MGH) and East Toronto Health Partners (ETHP), found ourselves in the midst of what could only be described as a spontaneous adventure. The community health ambassador lead I have the privilege of partnering with – a resilient, spirited woman – was at my side, ready to carry out our research project gathering essential health and equity data in one of our equity-seeking neighbourhoods.

Armed with surveys and flyers, our mission was to support other community health ambassadors (CHAs) from Flemingdon Health Centre (FHC) and TNO in engaging with the residents of a particular building complex to collect data door-to-door. Out of nowhere, a gust of wind caught us off guard. It was not just a breeze but a forceful wind tunnel, magnified by the surrounding buildings, transforming the space into a stage for an unexpected dance. My colleague was suddenly swept up in a whirlwind, the wheels on her walker turning her into an involuntary ballerina twirling at the wind's command. Her laughter, a mix of thrill and surprise, filled the air as her long hair flew behind her.

I, too, found myself caught in this chaos, my steps faltering as the wind decided to include me in its playful dance. Holding tight to our research flyers, I attempted to reach her, now a moving target in this crazy wind tunnel. The scene must have been a sight – two small figures dancing involuntarily in the wind, turning and laughing uncontrollably.

Finally reaching her, I tried to push her walker in the opposite direction using my body. Although I was worried about her safety, she exuded confidence and resilience, demonstrating her trust in her familiar environment and her ability to navigate it with grace. Our laughter spoke volumes about the bond forming between us, a bond forged not just in the pursuit of knowledge and service, but in the shared experience of vulnerability and joy. 

This moment, as fleeting as it was, encapsulated the essence of our partnership and the work we were embarking on together – what is often referred to as “meaningful” engagement: a partnership between community members, researchers and healthcare delivery organizations aimed at improving people’s health and closing the health inequity gap. It is a paradigm shift allowing community members to lead and drive change in the neighbourhoods they live in.

CHAs involved in this work are residents of East Toronto who are known community leaders or connectors, speak multiple languages and reflect the diversity of our neighborhoods. They demonstrated exceptional efficacy in promoting COVID-19 vaccination uptake and assisting residents in adhering to isolation protocols. Through innovative outreach strategies and culturally sensitive approaches, CHAs played a pivotal role in bridging healthcare access gaps, disseminating crucial information and providing wraparound support, especially within underserved and marginalized communities. Their efforts fostered trust, built rapport and empowered residents amid the pandemic's uncertainties. Their work was instrumental in keeping the community safe.

Inspired by the success of the CHA program, our partnership embarked on a collaborative journey to leverage expertise and networks to address ongoing community needs beyond the immediate pandemic challenges. Over the past year, we engaged in extensive dialogue and consultation with partners (TNO, FHC, ETHP and MGH) to identify key areas of community need and develop a strategic roadmap for collective action within equity-seeking neighbourhoods. A primary challenge identified was the need to respond to underlying health or social needs. To tackle this, we decided to train several CHAs to collect essential data from the community. Fast forward to now, when my colleague and I were caught off-guard by the wind.

After the involuntary incident, throughout which we could not stop giggling, she took me on a tour of the neighbourhood. She introduced me to her neighbours. She engaged in several dialogues in which residents asked her about certain health services (mainly appointments with family physicians). I watched her in action, a CHA in action, assisting community members to navigate our “not so much” patient-friendly care system. At times, she was just an amazing listener or companion to a senior resident. I observed her in awe of the impact she and other CHAs have on people’s lives every day. She then walked me to Health Access Taylor-Massey, a community and social services centre located in Crescent Town, where she was referring residents for different services – a program that I have evaluated in the past but never visited. I met brilliant providers there. What a beautiful and resilient community!

“More than Numbers” was born out of this encounter; of course, the concept is nothing new, but I feel, like many others working in the care system, I have become desensitized to people's stories. As a quantitative researcher, I had to reflect: “What is data? Isn't the data I work with borne out of people’s encounters with the system? Aren't they the ultimate owners of the data?” By the time I get to go through the many hoops of accessing healthcare data (say, utilization data) and identify a trend of some sort, people have been living it. By the time we call out the “cost of living” crisis, or the mental health crisis, or a decrease in cancer screening due to COVID-19, people have been living through the crisis. So, it seems like common sense that they should be leading the change based on their needs.

This encounter was a reminder for me that within the confines of data and research, there exists a space for human connection, for stories that can be quantified and those that can't be, but are equally vital to understanding the heartbeat of a community. This moment set the tone for our journey ahead, where we would discover the challenges and resilience of our community and the power of partnership with the community to carry research for, by, with and led by the community. It highlighted an essential truth: there are no data without stories, and no stories without data.

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