by Rianna Sarbajna

Graphic design by Vicky Lin

Our understanding of health has shifted vastly over time, from an exclusively biological lens to incorporate various social demographics that allow us to have a more holistic understanding of the factors impacting our wellbeing. In the healthcare field, health equity, social determinants of health, and EDI (equity, diversity, and inclusion), now dominate popular discourse in policy discussions. This is sometimes done so meaningfully, however, more often than not this is quite ambiguous. Despite their prominence in institutional agendas, translating these concepts into everyday clinical practice remains a persistent challenge. Conversations pertaining to health inequities often remain at the level of recognition, or policy reform, while practical mechanisms for identifying inequity at the bedside are less clearly defined. How then, do we begin to address health inequity at the level of the patient, within the ebbs and flows of everyday care? At the Hospital for Sick Children (SickKids), an attempt at answering this pressing question takes a simple approach—The Health Equity Data Initiative, otherwise known as HEDI. 

HEDI was first piloted at SickKids in 2023. This standardized questionnaire aims to collect data on patients’ and families’ basic social demographics such as racial and ethnic background, patient sexual and gender identities, family income, preferred language, disability status, and migrant status among other variables. The goal of HEDI is not to categorize patients, but to create a clear and robust image of their social context which shapes their health outcomes, access to care, and overall patient experience. Crucially, the collection of this data allows for comparability across patient populations, enabling the identification of systemic patterns that may need to be considered. In doing so, HEDI transforms these social factors into quantifiable variables that can be integrated into clinical research, resource allocation, and institutional decision-making.

Although HEDI appears to be a small dent in the broader landscape of health equity work, its impact at SickKids has been nothing less than substantial. Data collected through the initiative has been used to identify gaps in care, tailor social support interventions, and inform numerous research studies across the institution. HEDI data has directly informed studies on telemedicine access, as well as helped identify vulnerable populations to support the creation of patient social support funds. Critical to its success are the numerous student volunteers who have worked tirelessly over the past three years to collect this data, many of them doing so in one of the most sensitive and busy areas of the hospital, the emergency department (ED).

The ED is often where patients and families first encounter the hospital, drawing in the largest number of diverse patient demographics in a single department. It is a unique space in the hospital, one that is demarcated by the interdisciplinary care it provides and by the heightened vulnerability of the patients it cares for. For student research volunteers, navigating such a climate is both an insightful experience and an incredibly daunting task. 

When interacting with a population that is often in pain, anxious, and exhausted from hours-long waits, posing questions on income and personal identity becomes a task that requires the utmost sensitivity and expert judgement. We interviewed Jasmine Zhang, a seasoned HEDI volunteer, who reflected on her own experience collecting patient data. She explains, “[it was] quite daunting…not knowing how the patients and families are doing in their rooms…[and] you’re not sure if it’s an inappropriate time.” This reflection is indicative of central tensions within such work: the need to gather meaningful, timely data whilst remaining acutely attuned to the emotional and clinical landscapes of the ED. 

Jasmine Zhang is one of the longest serving student volunteers involved in the initiative. Beginning in 2023, her journey with health equity work began in the ED through the SickKids Emergency Assistants for Research in Child Health (SEARCH) program. This is an educational initiative aimed at integrating students into patient-specific research efforts in the ED, where she quickly became acclimated to the fast-paced realities of emergency care. 

At first glance, the collection of such data may seem deceivingly simple. Volunteers such as Jasmine are instructed to move room to room, introduce themselves, and offer families the option of completing the questionnaire with them. However, these volunteers are required to consistently make rapid, context-dependent judgments, deciding not only how to approach families, but whether it is appropriate to do so at all, often with access to limited and brief chart notes. Jasmine recounts her initial experiences as intimidating. “There’s a lot of urgency going around,” she explains, “as a volunteer, you don’t want to be a burden or bother anyone more with certain task.”  In addition to exposing her to the everyday clinical intensity and heterogeneity of the ED, such an environment has allowed her to become increasingly attuned to its complex emotional landscape. Families, often waiting for hours, may already be distressed, even in low-acuity cases. Thus, volunteers are required to approach each interaction with heightened situational and emotional awareness, while still fulfilling the research objectives of HEDI.  

Whilst the data HEDI collects is essential to building the basis for health equity work, the questionnaire touches on sensitive subjects, such as ethnicity, personal income, and sexual identity. Unsurprisingly, volunteers such as Jasmine often encounter a sense of hesitation or explicit push back during patient encounters with families asking, “Why does that matter?” or rejecting to answer certain questions. When encountering such scenarios, Jasmine emphasizes the importance of pausing to listen to families’ specific concerns. 

Jasmine highlights that the collection of feedback is just as important as collecting the data itself. She notes, “There’s no point in being defensive when this is the population you’re trying to help. You have to respect the circumstance they’re under…at the end of the day you respect their decision and autonomy for their kids.” Yet, despite the inherent challenges associated with such patient interactions, it is precisely this relational aspect of the work that drew Jasmine to HEDI. She reflects, “What I enjoyed most was actually interacting with the families and having a conversation with them, that felt a little bit more fulfilling to me.” Having previously participated in more traditional research roles, she found herself drawn to the opportunity for direct engagement with families to more effectively understand their experience navigating the healthcare system.  

Nearly three years later, her experience as a volunteer and a member of the HEDI team has fostered a growing sense of confidence within Jasmine. “It takes a long time to build that confidence in the [ED], but once you have that, you realize that you’re well supported.” Her confidence is not simply a product of time, but from hours of learning to operate within uncertainty, pivoting between various unique patient cases. She has also been backed by the support of a team that both guides and legitimizes her work as a volunteer in this high-stake environment. Jasmine’s work, and that of the broader HEDI team, is a reminder that while health equity work may demand sweeping upstream reform, its foundations are laid in everyday patient encounters. This can be observed through the quiet and consistent efforts of research volunteers, and their willingness to listen with patience and care.

HEDI itself, however, extends beyond the bedside. It is not a static initiative but rather a dynamic framework that is continuously refined to reflect the evolving realities of SickKids’ patient populations. In the spring of 2026, the questionnaire will expand to include questions on a patient’s ability to pay for basic needs, such as utilities, food and housing, as well as their ease of access to transportation to and from the hospital. In a landscape where equity is often discussed solely in theory, HEDI represents a deliberate shift towards actionable progress. By embedding patients’ social realities into clinical systems, HEDI aims to transform health equity from an aspiration into measurable and actionable change.