A Look Into our Data Operations: Interview with Chris Allen

Behind every impactful research finding is a system that ensures data is trusted, timely, and meaningful. In this post, we sit down with our Data Operations Lead, Chris Allen, to explore how data powers the day-to-day work of TARGet Kids! (TK!). From supporting clinicians and researchers, to strengthening data quality and governance, Chris shares insights into the often-unseen work that helps turn real-world data into evidence that improves child health.

Members of the TK! Data Operations team (based out of the Applied Health Research Centre at Unity Health Toronto). Left to Right: Michelle Goodman, Marc Denzel Nunez, Charlie Keown-Stoneman, and Chris Allen.

Marc Denzel Nunez & Chris Allen visiting the Hospital for Sick Children.

Q: Many families know TARGet Kids! from their child's primary care visit. For parents who may not know what happens behind the scenes, can you explain what your role is at TARGet Kids!?

I lead the data operations of the program and so that means that my primary role is ensuring that the data is collected safely, efficiently, and accurately – as accurately as possible to facilitate data analysis. My role, and that of the data operations team, is a truly collaborative endeavor involving considerations of study planning, database development, data management, analytics, privacy, ethics, and data access oversight. I would say those are the fundamental things that go into the day-to-day role of data operations within TARGet Kids!.

Q: When a child and family take part is a TARGet Kids! study or complete their questionnaires, what does your team do to make sure their information is collected carefully and respectfully?

So much of the work takes place before the data is even collected. The process really requires the expertise of the entire TK! team – it's not just data operations. Much of the thinking around data collection begins with, first of all, ensuring that the questions being asked are framed in an inclusive way. This allows us to optimize the participants’ interpretation and collect the data we intend to collect.

Then there are other considerations, such as participant burden, including the time required to complete questionnaires and the risk of parental burnout. This is something that we continuously assess, especially within TK! – a longitudinal cohort that collects a large amount of data and has so many trials. Workflow is something we think about a lot, because we have to ensure that the processes make sense for parents. Privacy is a very big thing we consider, ensuring that anything we’re doing is within the provincial and federal privacy laws. Ethics as well. Ethics approval is something we’re very involved in, ensuring we have institutional approval to collect the data that we’re collecting.

One thing that we really focus on is around the accuracy of the data we collect. That might include programming what we call “edit checks,” which are systems to ensure that the data we’re collecting makes sense. For example, we want to make sure that any dates provided make sense within the schemes of the questions that we’re asking. That’s a perfect example of how we would program a check to ensure that data is collected correctly. We may also program data quality rules, which prompt participants when they’re entering data if something is seemingly awry. Those are the main ways that we ensure that data is collected carefully, but respectfully as well.

Q: How does good data management help ensure that TARGet Kids! research can be trusted by families, doctors, and policymakers?

I might be biased, but I think good data management is the cornerstone of a lot of the work that we do. For me, it’s a very important first step because it’s how we ensure that the data that’s being collected is logical. Also, it’s a critical step to identify many issues that researchers have grappled with. So it’s often – especially in a cohort like this, again that’s longitudinal – it's an iterative process and it allows us to learn lessons and improve our data collection framework to support the analysis that ultimately gets us the findings that benefit the community as a whole, and more specifically children’s health.

Q: What would you like parents who participate in TARGet Kids! to know about how their child's information contributes to meaningful research and better care?

Every bit helps. It’s important for families to recognize that in order for us to be confident in our findings, we need to ensure that we’ve collected enough data to reduce the possibility that our observations are just by chance. It’s also important that our participants represent the population of the city, the province, or the country as a whole. For that reason, I think parents should never have any doubts about the impact their collaboration has on our work. It’s something that is incredibly important to us and also incredibly important to the findings we produce. I would also implore families to continue to collaborate with us to ensure that we can continue the work we’re doing to support children’s health.