Embarking on my new journey as the IPC’s Scholar-in-Residence

Guest blog by Dr. Khaled El Emam

As I begin my tenure as the IPC’s second Scholar-in- Residence, I look forward to the opportunities and challenges that lie ahead. In this age where data, especially personal information, has become an indispensable asset for all organizations, we have much to consider when it comes to responsible data stewardship and our responsibility of protecting privacy.

The use and disclosure of data for secondary purposes can have impactful societal benefits, but it must be done with the protection of privacy at its core. Especially with the rapid developments in artificial intelligence, which has an insatiable hunger for data, the potential value of data access to Ontario can be significant.

I have been working with health data for multiple decades, and I see tangible societal benefits of its use in terms of more effective research, better public health surveillance, as well as improved treatments being developed and brought to market. But access to this data must be done in a manner that protects the privacy of individuals. The social license that patients, customers, and citizens grant to those individuals and organizations that process their data has conditions, and these conditions include responsible stewardship of that data.

But what does responsible stewardship mean, and how do we enshrine it in policy? This will be my focus during my time as the second Scholar-in-Residence at the Office of the Information and Privacy Commissioner of Ontario.

There are a handful of components to responsible stewardship of data that are arguably not controversial: the data must be anonymized, transparency about how the data is processed is critical, the data applications must be deemed ethical, and this includes ensuring the fairness of decision-making tools developed using the data. To make it easier for data custodians to implement these kinds of practices, there needs to be clear guidelines, templates, and education. Anecdotally, whenever these ingredients are missing, it creates uncertainty, and uncertainty oftentimes leads custodians to not leveraging the data that are available. Patients, for example, expect us to use their data so that their care providers can make better decisions. It would be unfortunate if uncertainty means we do not gain important insights from the available data.

I look forward to working with the IPC’s team and external stakeholders to help develop data stewardship policies, guidelines, templates, and educational capabilities. I will incorporate what has been written in the academic literature, as well as my practical experiences helping organizations solve these problems, to contribute to the development of Ontario-specific materials. The end game is to enable an ecosystem of experts, researchers, service providers, and technologies that can sustain and evolve these results.

As a concrete example, additional operational guidance can be developed building on the excellent de-identification guidelines from the IPC, coupled with the principles in the recent international standard. There is a nontrivial body of generally accepted best practices for anonymization, and consolidating and operationalizing those practices to make it easier for the public sector, the healthcare sector, and others to apply them would move the needle in the right direction for the responsible processing of data.

This incredible opportunity working with the IPC will also provide invaluable learnings that will help me formulate a longer-term future research agenda that would address the biggest challenges experienced by regulators with the responsible uses and disclosures of data.

I look forward to furthering this mission of using data to its fullest to bring benefits to Ontario, while protecting the privacy of individuals

Dr. Khaled El Emam is the Canada Research Chair (Tier 1) in Medical AI at the University of Ottawa, where he is a Professor in the School of Epidemiology and Public Health. He will be serving as IPC’s second Scholar-in-Residence from April 29, 2024, to June 29, 2025.