A Tapestry of Collaboration: Presenting at the Northwest SPOR Forum

A Tapestry of Collaboration: Presenting at the Northwest SPOR Forum

Welcome to Patients’ Corner. Here you will find a story written by Heather Dyck and Jenny Lorca, both Patient Partners with CPN. This story delves into Arts-Based Qualitative Research, specifically a research project that approaches Chronic Pain and Identity through digital story telling. We invite you to journey with us to the Northwest SPOR Collaborative Forum. You will learn how the Painful Truths, Common Threads in a Tapestry of Chronic Pain and Identity Research Study (2025) inspired the Patient Researchers who created the stories and the rest of the research team during the project. Now we hope we will inspire you to look at health research and digital story telling with the light of possibility and the knowledge that Arts based Research with Digital Story Telling as the pathway really WORKS!

    __________________________________________________________________________________

Q1. How did the Chronic Pain Network (CPN) support the digital storytelling (DST) project with AbSPORU, and why did that support matter?

The Digital Story Telling (DST) project started almost casually. The idea came to the CPN Patient Engagement Committee more or less as, “By the way, this opportunity has come up—what do you think?” We were all excited, but the key thing was that CPN didn’t leave it at the level of “nice idea.”

They put real resources behind it. CPN invested a significant financial contribution so that we could take part in a six-week digital storytelling workshop with AbSPORU (Alberta SPOR Support Unit). They didn’t just fund people who were already deeply embedded in CPN—people connected through Pain BC and other networks such as the CIHR were also supported. That made the group more diverse in age, location, and background, which in turn made the stories richer.

The CPN also provided honoraria for participants. For some of us, this was the first experience of being compensated for our time and expertise as people with lived experience. It was also their first formal connection to CPN, which has now led to ongoing roles on committees and steering groups. Even when individuals couldn’t accept honoraria because of income or disability-benefit constraints, there was a shared sense that the funding was being used to widen the circle.

On top of the money, CPN backed us with people and infrastructure. For example, Rachel Roy supported the technical side, Divya handled all the booking and scheduling as well as the coordination between CPN, Pain BC/Pain Canada, and AbSPORU, and Brandon helped hold the logistical “container” around the project. Leadership gave explicit permission to “go for it,” which meant we could focus on the creative and relational work.

That support continued beyond the six weeks. CPN facilitated our attendance and participation in other meetings and events—like the Northwest SPOR Forum—and supported us to present and share the work in national spaces such as the Canadian Pain Society’s Annual Scientific Meeting (CPS ASM). Without that, the project might have stayed a one-off workshop. With it, Digital Story Telling became a concrete example of patient-led, arts-based research in the chronic pain community.

Q2. Could you briefly describe the Northwest SPOR Collaborative Forum and your involvement in it? Have you been to an event like this before? What was your impression of the Forum?

Most of the events we’ve been to, whether online or in person, have been very pain-focused—chronic pain conferences, forums, webinars—where you see a lot of the same people from the “pain ecosystem.” They’re valuable, but unlike our experiences with the CPN and Pain Canada, for example, there’s usually a fairly clear divide between “the researchers and clinicians” and “the patients”; and people with lived experience often have to work quite hard just to keep the door open. There are individual groups of researchers, health system professionals, decision makers and Patient Partners that have embraced Patient Oriented Research as the only way to do research, but they are still the minority.

The Northwest SPOR Collaborative Forum was different. It was truly multidisciplinary and, maybe even more importantly, it had a much higher proportion of people with lived experience in the room. People were there not just for chronic pain, but for diabetes, chronic kidney disease, arthritis, housing and food insecurity, interest in AI and robotics, and more. Some of them may never have heard of the Chronic Pain Network or Pain Canada, but chronic pain still showed up in their stories—sometimes as the main issue, sometimes in the background, but very present.

What struck us was that patient-oriented and patient led research felt embedded, not bolted on. The general attitude was, “We are all experts in our own area.” Instead of lived experience being an add-on or a box to tick, it was core to how the Forum functioned. That was an absolute eyeopener. It honestly blew our minds and opened up so many more possibilities in our heads for what real partnership in research can look like. We came away hungry not just to be participants in research, but to lead it.

Q3. What was the value and impact of attending the NW SPOR event in person as CPN and DST representatives? What interactions and potential partnerships came out of it?

Being at NW SPOR in person was huge. CPN’s support meant we could attend despite different mobility needs. Once we were physically there, the kind of conversations we had changed completely. It wasn’t just about giving a talk and logging off a Zoom—there were all the “off the cuff” chats at coffee breaks, in hallways, around tables. Given the nature of our presentation and its visceral impact on our in-person audience, our feedback wasn’t immediate. Being present meant that throughout the entire event we were able to continue to have meaningful conversations; in fact, many participants said the DST work was the most impactful thing they’d seen that day.

One of the most meaningful experiences was sitting down with people who had created a powerful short film about housing and food insecurity and diabetes, called Low Priority. That film became our “new favourite movie,” not because it was fun, but because it got the message across so well. We were able to have many wholesome discussions about partnership with other attendees, many of whom were patient research partners and collaborators, and about the possibilities of digital storytelling. We saw what they had and wanted some of it; they saw what we had and wanted some of it. It was a true exchange; this is knowledge mobilization.

Moreover, these interactions occurred along a continuum of events where we had presented our work with Painful Truths as a group and individually. Those interactions didn’t end when the conference did. Being seen in that space as CPN and DST representatives led to invitations to present elsewhere. It also helped knit together relationships across networks like Pain BC, Pain Canada, CIHR?funded initiatives, and PEPR (the Partnership for the Engagement of People in Pain Research). We found ourselves carrying multiple “flags” at once and showing how well they could work together around storytelling and partnership.

Q4. Why did choosing “identity” as the central theme matter for the final collection of digital stories? Did it help create a cohesive product for discussing chronic pain and identity?

From the very beginning of the DST project, the theme of “identity” emerged as our common ground. In the first hour of working together, eight individuals—many of whom had never met in this way before—chose “identity” as the central focus. That alone says something.

We wanted to ask the hard questions: Who are we in pain? How does pain change our identity? How do our culture, race, history, family roles, diagnoses, and social location shape our experience of pain—and how does our pain shape all of those things in return?

Each person’s story took a different route into those questions. Some focused on the long road to diagnosis; others on parenting, loss of function, or creativity as a way to live with pain. Some drew on powerful metaphors and images—fire to represent burning, inflammatory pain; a garden as a symbol of family, grief, and growth; the ocean linking geographies and histories; the meaning of a name. Our stories collectively dug into race, ethnicity, cultural expectations, art, movement, creative expression, and growth, and how those shape what kinds of pain are allowed to be visible or spoken.

On their own, each story is distinct. Together, they form a cohesive journey. While each of our views were unique, we discovered that many parts–our individual threads– overlapped and wove themselves together as part of one larger picture. The piece of pain that was most present for each of us varied, but we could all recognize ourselves in each other’s experiences, because at some point we had been there—or knew we could be.

The metaphor that best captures this is the tapestry: each story is a thread with its own colour and texture, but together they create something larger than any individual part. Because the unifying theme was “identity”, the final collection became more than a set of personal testimonies. Our Digital Story Telling project became a cohesive product that people living with chronic pain, researchers, clinicians, and others can use to talk about how pain reshapes who we are and how we move through the world.

That, to us, is the real power of this work.

Jenny and Heather

Heather Dyck, Jenny Lorca and Megan MacNeil

Painful Truths Study activities (2025-2026)  Painful Truths, Common Threads in a Tapestry of Chronic Pain and Identity Research Study (2025)

CPN’s YouTube playlist for the DST videos  https://www.youtube.com/watch?v=K2jQgDz0a80&list=PLfcW6HmBmZIlhBhdE5qGCxtAgYJihl0mC

NW SPOR Forum webinar, hybrid in-person/Zoom presentation: https://vimeo.com/showcase/12264387?video=1195776350

ISOQOL 33rd Annual Conference (Prague, October 2026): Our abstract has been accepted for an oral presentation at the International Society for Quality of Life (ISOQOL) conference.

Manuscript in Progress: We are currently working on a manuscript for submission to an academic journal.

NorthWest SPOR Collaborative Forum (2026) (May 12-13, 2026): Jenny, Heather, Kaia (trainee), and Ambar (AbSPORU team) presented in person, with Tanis (PP), Ada (PP), and Sandra (AbSPORU team leader) joining virtually. We had a full in-person audience (including Sadia [AbSPORU team]) and approximately 17 additional online participants (including Jillian [PP] and Divya), with very positive feedback on the session.

Global Conference on Person-Centred Care (Gothenburg, May 2026): Sandra had the opportunity to deliver a Digital Storytelling Workshop using Painful Truths as a case study. With Tanis’ permission, we shared their story and facilitated reflection on chronic pain, identity, ethical considerations, and key takeaways. The workshop was very well received, with many participants wishing for additional time. We also presented a Painful Truths poster.

Canadian Pain Society’s 46th Annual Scientific Meeting (April 29–May 2, 2026): Jenny shared her story and highlighted our work at this conference.

Online Educational Event (January 29, 2026): As a team, we planned and delivered an online educational session.

Putting the Pieces Together Conference (November 2–6, 2025): We were invited to present at the Putting the Pieces Together Conference, with Patient Research Partner Storytellers leading two sessions during the Gentle Moments stream.

 Patient's Corner