Conrad Pow is the Senior Lead for Digital Health and oversees Diabetes Research Connect at Diabetes Action Canada. As a father of a child with Type 1 Diabetes, Conrad brings a deeply personal perspective to his work, advocating for the importance of data in improving health outcomes for those living with chronic conditions.

Recently, I was invited to speak at the Health Data for All of Us event, hosted by the Health Data Research Network Canada in Ottawa, Ontario.  

The speakers and conversations were not just about access or infrastructure, but about responsibility, trust, and making sure that the way data is used reflects what matters most to the individuals behind it.  

I had the opportunity to talk about the work we are doing at Diabetes Action Canada (DAC), using health data to prevent complications from diabetes. I approached it from two perspectives: one as my role as Senior Lead of Digital Health, and two as a father of a child living with Type 1 diabetes.

These aspects are constantly informing one another.

When DAC patient partners told us that their greatest fears are losing their sight or losing a limb, my mind shifted to Chloe, my daughter. Will she have these same fears as she gets older?

It forces me to consider what our “coordinated” health system is doing today and where it is falling short. 

I discussed DAC’s work in diabetic retinopathy screening, where we found that a large portion of people living with diabetes, in three Community Health Centres, were overdue for screening.

This project required navigating complex privacy frameworks, consultation with the Office of the Information Privacy Commissioner and building new processes that did not previously exist. Investments in screening, particularly for uninsured populations, generated substantial downstream savings for the health system.

More importantly, they prevented avoidable harm. 

The same principle applies to our work in lower limb preservation. In collaboration with clinical and data science partners, a tool was developed that uses routinely collected hospital data to identify early warning signs of serious foot complications. Instead of waiting for a crisis, the goal is to intervene earlier, to predict risk, and to guide care in a way that prevents irreversible outcomes. This is a shift from reactive care to preventative care and provides us access to a missed opportunity – something our patient partners are asking for. 

It was clear at the conference, that there is a growing recognition across Canada, that data on its own does not create impact. It is how we govern it, how we connect it, and how we apply it within real care settings that determines whether it makes a difference.  

Hearing from speakers like Terri Price of Greg’s Wings provided a clear reminder that behind every dataset is a person, a family, and a lived experience that deserves respect and care.

Juliana Wu, Executive Director of Health Data Advancement at CIHI, spoke to the importance of national collaboration to create a more connected and accountable data ecosystem. Several connections and potential collaborations were made with CIHI, HDRN and Cystic Fibrosis Canada.  

When the audience was polled, they were asked to think of their own health data journey and to think of two words that described their experience with the health system so far. The top five words were: disconnected, frustrating, fragmented, disjointed and complex.

This wasn’t an eye opener, it was confirmation.

I left the event thinking about the responsibility that comes with working in health data. We often talk about access and innovation, but there is also a moral obligation that sits underneath it all. If we can use data, then we must ensure it is being used to protect people, to prevent harm, and to respond to what matters most to our patients.