CARING in Action from People with Lived Experience

Posted on August 31, 2026

CARING in Action became a project from the Hackathon hosted in 2024 by CPN’s Training and Capacity Building Committee. After the Hackathon wrapped up the team went on to apply for grants to publish their work. We are pleased to announce the publication can be read in the Canadian Journal of Pain. As our CPN’s Patient Partners were involved in the research and publication process they share more of their experience below.

From Swapnil Shah:
My association with the CARING project started as a Patient Mentor on the hackathon team. Since then, the project has moved through a grant application, a manuscript submission and a poster presentation at the Canadian Pain Society conference.

For the grant application, we had to translate what we built into a funding proposal. I appreciated that the patient partners were asked to weigh in on shaping the plan itself. I had the opportunity to review drafts of the application, adjusted sections that were too heavy on academic language and added information about what patients would get to decide. This was important for the project’s values to hold up.

Being a co-author on the CARING manuscript for a journal was a new kind of contribution for me. Academic writing has its own language and I focussed on ensuring that the language did not overshadow the lived experience. I reviewed sections about patient partnership, ensured that we were a genuine part of the process and made sure the plain language of “connect, ask, respect, inform, nurture, generate trust” stayed at the center of the paper.

This framework includes patients from the start. In a hackathon room, everyone understands why the patient voice belongs there. At a conference, I was talking to clinicians and researchers seeing the project for the first time talking about the difference between a patient partner as a co-creator rather than a research subject.

Once the hackathon energy fades, it is absolutely worth staying involved as a patient partner. The influence is quieter but it is still there. And if you are a researcher wondering how to keep patient partners engaged past the initial workshop, invite us into the funding proposal, the manuscript revisions and the conference presentation.

CARING started as a hackathon project. It is now a published paper, a training tool and a conversation happening at a conference. I am glad to still be part of it.

Read full publication here:
https://www.tandfonline.com/doi/full/10.1080/24740527.2026.2696249?utm_source=ig&utm_medium=social&utm_content=link_in_bio&fbclid=PAcGRvZgJleHRuA2FlbQIxMQBzcnRjBmFwcF9pZA85MzY2MTk3NDMzOTI0NTkAAadsrsUtWaHVtiPopaN_MjLqI489fnEFkb5_Wxp_RmHrqT7YSdAn4eSs1-97Nw_aem_ehhXTM6yqh1RzhzThv6FDw

Read Patient’s Corner “Co-Creating Better Care: Developing the Caring Framework at the CPN Hackathon”:
https://cpn-rdc.ca/co-creating-better-care-developing-the-caring-framework-at-the-cpn-hackathon/