Learning by Doing: A Supervisor's Reflection on the Data Empowerment Clinic

Tell us a bit about yourself and what brought you to the Clinic. 

I'm a PhD student at the cultural media and creative industries department. I’m also a supervisor on the health data cooperative team, which is focused on helping to build a health data cooperative with an Indigenous community in Toronto, Canada. My background is in social anthropology and before I started this PhD, I worked for several years with tech startups in the market tech industry, or targeted advertising industry, as a data scientist. To be very candid, it wasn’t the most ethical work. A lot of those companies, they're focussing on ethics, but mostly from like a GDPR angle and asking questions like “what can you do?” rather than “what should you do?”

Towards the end of my time there, my focus was shifting to questions of what we should do as people working within these companies and really thinking about it from a more holistic level. Not just how we collect data, but how this impacts people: at an infrastructural level, thinking about the environmental impacts of our work, our rights as workers, and how much say we have in doing — or refusing — this work. This is what I really like about the work with the Data Empowerment Clinic because I feel it really takes those ethical principles and tries to apply them.

My PhD is on the politics and production of Iraqi dance industries, especially in southern Iraq. The parallels are that a lot of the work or the research I'm doing centres on community archiving because in the case of Iraq, after the US-led invasion and also the history of Iraq, archives were looted and destroyed, giving rise to significant grassroots movements including archiving communities. Joining the Data Empowerment Clinic was a great opportunity because it got me to think about those things from a more practical level: what does it mean to work with grassroots communities who want to build something like a cooperative?

What does data empowerment mean to you?

When we say ‘data empowerment’, it can feel like such an abstract concept. There are also certain assumptions that come with 'data’ itself — when we talk about health data, for instance, we tend to think of statistics and quantitative measures.

Our current legal landscape – the law and thinking around data – is Western-centric and operates with that logic. What has been interesting is trying to unpack with students how we can move away from that Western-centric understanding of data, and incorporate aspects the law doesn't, or isn't interested in, such as a community's oral histories, or what simply cannot be quantified. All of this is deeply relevant to data empowerment, and especially to health data empowerment, where knowledge of the land, for example, also contributes to a more holistic understanding of collective health and wellness.

What has your experience been like working with partners?

When you're working in academia, a lot of the work becomes quite theoretical especially when you're talking about things like empowerment or data sovereignty. So what is really quite amazing about the work with the Data Empowerment Clinic is that you actually directly get to work with a partner, build it out and actually see how these things happen and how they work because a lot of the times the process doesn't have clear answers, or it can be quite messy. What I like is that instead of this being an isolated project where you're not really interacting with a community, here you're working directly with them and actually centring their concerns rather than what you can get out of it from a research or impact perspective. 

What has been the highlight of your experience at the clinic so far?

All of it has been a big learning experience. I don't have a legal background, so a lot of how I think about things isn't necessarily rooted in the law. The Clinic has helped me think about how we can achieve what we want within a legal landscape, but also what needs to be navigated and built differently across contexts. From our partner, we've learned that this context shifts from city to city, and sometimes community to community, particularly when it comes to Indigenous rights and sovereignty.

With this programme you are able to directly speak with clients with partners and build something that is community focused, grassroots led. From talking with our students, it's clear this is part of what drew them to their degrees in the first place: they want to be in spaces where they can help people and make an impact. With this project, they can actually see what that looks like. It also genuinely shifts the power dynamic toward communities, rather than the university - we are centring their needs and delivering together in collaboration, rather than chasing an outcome that looks good for grades or an impact report.

What do you see as the next steps for the way we think about tech and data?

What has been useful is speaking with experts from different, interdisciplinary backgrounds, and involving community members in the conversation from the start. One big thing we've learned is how these engagements really take time, commitment and a big degree of care. These are not questions that can be answered within a few weeks - even in a theoretical sense, understanding what it might mean to build an empowering cooperative involves genuinely difficult questions. So, to be able to think about it, work on it directly and apply it, requires a long-term project with ongoing learning – which includes testing, failing, and trying again.

I would envision projects like this as a meaningful alternative to writing a dissertation – something that you can really commit to over an extended period and see results from. And as you're working on something that you would likely want to continue after graduating, or pursue as a career, it becomes directly relevant experience for the future.