COMMUNITY VOICE: UBC Tandem study meets the DTES CREW

One of the authors of the ‘Research 101’ manifesto writes about how community members are bringing Downtown Eastside perspectives to a study on brain health.

By Nicolas Crier, 24 Nov 2025

Photograph of the author, Nicolas Crier, by Tanya Goehring, courtesy of Megaphone magazine.

Editor’s note: Megaphone magazine originally published this in August 2025. The author, Nicolas Crier (Cree), is a member of The Shift peer newsroom at Megaphone, and one of the authors of Research 101: A Manifesto for Ethical Research in the Downtown Eastside. He has spent approximately half his life surviving in the streets and more than a decade in the Downtown Eastside. He is a published writer and takes part in numerous academic partnerships through universities and health authorities. He is the proud father of one son.

Some Megaphone readers may remember an article I wrote a while back about the Downtown Eastside Community Research Ethics Workshop (CREW) — a small pilot project based at the UBC Learning Exchange, which grew out of the 2018 publication Research 101: A Manifesto for Ethical Research in the Downtown Eastside.

The manual emerged from a series of conversations among local organizations with deep ties to the community — groups concerned about the harm caused by nearly half a century of relentless research attention from academic institutions and commercial interests.

They shared a common vision: that the community should have a say in how research is done, and be active participants in the process on their own terms.

One such longitudinal study, known as the Hotel Study, had already been underway in the Downtown Eastside for four years, exploring the lives of local residents. From it, a new project emerged: the UBC Tandem Study, led by two specialists in neuropsychology and neuropsychiatry. 

The Tandem Study explores brain health among unstably housed people over 40 through personal interviews, scientific testing and MRI scans — aiming to better understand their experiences and generate meaningful, scalable data that could inform future support.

At the time, CREW — of which I’m a member — was just getting started, still getting our feet wet, when the UBC Tandem Study reached out expressing interest in collaborating.

So our team — Samona Marsh, Jules Chapman, Jim MacLeod and myself — met with the study’s lead investigators, Dr. William Panenka and Dr. Allen Thornton, along with research coordinators Tanya Kamagiannis and Ester Song, to explore how CREW might support their work.

We began by reviewing their ethics application to the UBC Ethics Board and found no cause for concern. We shared this honestly with the research team and expressed our gratitude for being invited into such an important project. It felt only right that a study of this scale, involving DTES community members, include someone from our side to ensure participants were treated with respect and that researchers made a genuine effort to connect with each individual in a meaningful way.

This is what CREW believes leads to stronger research outcomes: reciprocity and respect, flowing both ways throughout the study.

And so far, that’s exactly what we’ve seen.

“Our partnership with the CREW has been invaluable in ensuring that research conducted within the DTES community is both ethical and truly beneficial to its people,” said Research Coordinator Tanya Kamagiannis when I spoke to her recently about her take on our partnership.

“CREW’s involvement in the UBC Tandem Study, has helped to maintain accountability and respect throughout the study. The team at CREW has been fantastic to work with, each person is deeply invested and genuinely cares about making a positive impact. Their dedication to the study and their thoughtful approach to research ethics have been pivotal in ensuring a meaningful and respectful process. This collaboration exemplifies how community-driven research ethics can positively influence the outcome of studies and build trust, ensuring that the research is conducted on the community’s terms.”

This collaboration exemplifies how community-driven research ethics can positively influence the outcome of studies and build trust, ensuring that the research is conducted on the community’s terms.”


–Tanya Kamagiannis,
Research Coordinator, Tandem study

As this longitudinal study continues to explore brain health in the DTES, CREW is proud to stay involved—helping maintain accountability and build strong, respectful relationships between the institution and the community. It’s a kind of collaboration that, to our knowledge, has never been successfully attempted in the DTES before.

All in all, the CREW project is off to a strong start, and we’re grateful for the ongoing support from the universities involved. A heartfelt thank you to UBC for inviting us to help safeguard the well-being of our community members throughout this important research. We wish the Tandem Study team continued success as they deepen their understanding of brain health in the DTES.

If you’re interested in participating in the study or would like to learn more, feel free to reach out to me or Tanya Kamagiannis using the contact information below.