How Open Data Can Show Us What Needs to Change in Health Care
By Eva Schaessens
Making complex health information transparent and easy to understand turns raw data into something meaningful. When that information is clear, it becomes easier to see where the system is supporting patients well, and where key gaps remain.
Open data is built on a simple idea, when information is shared openly and explained clearly, it can help solve real problems. That principle shapes the work of Zahra Shakeri (Dalla Lana School of Public Health), who examines what we can learn when patient feedback is viewed at scale. Her IHEP Catalyst‑supported project analyzed more than 111,000 open‑text comments from patients across 45 Ontario hospitals between 2017 and 2021, including the start of the COVID‑19 pandemic. With a dataset this large, patterns that normally stay hidden became visible, from communication gaps to barriers shaped by social determinants of health. Insights about access, communication and fairness, Zahra notes, can help hospitals prepare for crises and strengthen recovery afterward, “Sometimes the biggest risks are the ones we are not measuring. When we miss patterns in patient experience, the consequences can affect public health.”
Seeing patient experiences collectively reinforces the value of sharing information more openly. It shows not just individual stories, but broader patterns of where care is working well and where it needs improvement, an insight reflected throughout Zahra’s research. Such openness, however, also requires care. Even anonymized comments can contain sensitive details, like rare conditions or specific dates, that might unintentionally identify someone. Protecting privacy means adding safeguards such as generalized timestamps, removing uncommon details and carefully reviewing datasets before they are shared more widely.
Clarity is also essential. Without context, open data can be easily misinterpreted. Whether the dataset includes patient comments or other health information, releasing it without explanation can lead to conclusions it was never meant to support. “Releasing data is not enough. People need clear context about what the data shows, what it leaves out, and how it should be interpreted,” Zahra says, emphasizing the importance of plain‑language notes that outline what the data includes, what it excludes and how it should be interpreted.
The themes that emerged from her analysis offer a deeper view of the factors shaping health, language barriers, transportation challenges, accessibility issues and gaps in social support. As Zahra notes, "Patient comments show that health care is shaped by more than what happens in a clinic. Language, transportation, accessibility, and social support all affect whether care is truly reachable." These insights help decision‑makers anticipate needs, plan services and communicate more effectively with diverse communities.
Recent and past health‑system pressures, including those experienced during the COVID‑19 pandemic, have made the importance of clear, accessible information even more evident. During periods of heightened demand, gaps in data about testing, capacity and resources made navigating the system more difficult for both patients and providers.
AI has also played a key role in Zahra’s research, making it possible to analyze tens of thousands of comments in days rather than months. As Zahra explains, “We are moving toward a future where people can talk to the data, ask better questions, and get answers they can actually use.” It’s a direction that aligns with the broader goal of open data, information that is not only available but genuinely usable. It also highlights another consideration for the future of open data, ensuring transparency in how AI tools interpret and summarize information.
Open, well‑explained data can help turn those unknowns into insight and offer a foundation for more responsive, equitable health systems. The next step is deciding how we use that knowledge to strengthen care across our communities. As Zahra puts it, “Open data will not fix the health system on its own, but it can show us where change is needed most, and where action cannot wait.”