Is research just for researchers? How can lay people access new knowledge generated by researchers?
My experience in the Douglas Open Science Project, “Open science for equity, diversity, inclusion, and accessibility: creation of plain language summaries with patient-partners,” gave clear answers to these questions. – Dr. Sakiko Yamaguchi
The collaboration with Plain Language Summary Working Groups, consisting of Youth and Loved One Council members of CEYMH, as well as Mathias Castaldo and JoAnne Mosel from CHILD-BRIGHT Network, and Tosh Watson, Lived Experience Coordinator of CEYMH, has shown me that people with lived experience can become valuable research partners who contribute to effective dissemination of research findings.
The project started in October 2025 with an aim to contribute to bridging the gap in communicating research evidence to diverse audiences by developing skills of patient-partners in creating plain language summaries. These are short summaries of journal publications written in a non-technical language. People with lived experience help researchers interpret the research findings and write plain language summaries (Tobiano et al., 2024). On the other hand, 90% of plain language summaries are written by researchers for researchers (Zarshenas et al., 2023). In this context, my goal was to create a space where partners with lived experience develop new skills in knowledge dissemination so that their research collaborations can expand beyond consultations.
I previously collaborated with Mathias (youth with a brain-based disability) and JoAnne (a mother of a child with rare disease), who have extensive experiences in research engagement in the CHILD-BRIGHT Network, a pan-Canadian patient-oriented research network in childhood disabilities. Inspired by their work, I believed that this project can create an opportunity to demonstrate how people with lived experience can support the effective dissemination of research findings.
Dr. Sakiko Yamaguchi
Setting Up the Working Groups
Following the introductory workshops organized together with Mathias and JoAnne, we recruited members who were interested in joining two working groups:
- One consisting of four Youth Council members (Meghan Henderson, Kiauna Gow, Catherine Nadeau, Gemini Lo) with Mathias, and
- another consisting of three Loved One Council members (Chris Fraser, Trixi Schunn, Lucila Guerrero) with JoAnne.
They joined this initiative, as they wanted to ‘make a difference in how mental health research is communicated’ (Meghan), believing that ‘people with lived experiences can highlight what matters to the readers’ (Gemini) and ‘everybody has the right to read research’ (Kiauna).
As working group members’ experiences in reading academic publications and creating plain language summaries varied, it was important to create a space where they felt comfortable participating in a way that they would like to, while learning from each other.
The Co-Creation Process
After agreeing to create plain language summaries of the selected article and book chapter, working group members met regularly with support from Tosh (Lived Experience Coordinator). At each meeting, discussions on the content of the article involved identifying key messages, reviewing and synthesizing the shared ideas, and making the language accessible. The online template in Canva and in the Google Doc was an open space where working group members shared their ideas prior to the meetings. In addition, the zoom translation captioning was helpful for the Loved One Working group members to interact both in English and in French.
Lived experiences generated unique dynamics in the co-creation process. In the Loved One Working Group, the topic of the book chapter was about men’s mental health. While each member brought various perspectives on this sensitive topic, everyone listened to each other respectfully. The shared lived experience shed light on the complex nature of the issue of men’s suffering which is often masked by existing gender biases and stereotypes affecting various policies and services. In the Youth Working Group, lived experience guided the discussion when carefully selecting words that add nuances to the concept and experiences presented in the article (e.g., ‘recovery’). Youth working members were also reflective on the representation of voices, critically asking themselves whose perspectives are presented in the summary that they created.
From Co-Creation to Community Dialogue
After a six-month period of iterative discussion, both Working Groups finalized plain language summaries. They are published for non-researcher audience to access and generate dialogues on the topics in the community.
This project experience shows that plain language summaries created by partners with lived experiences not only make research findings accessible but also provide more insightful understanding of mental health conditions and experiences focused in research. In addition, collaboration with partners with lived experience to co-create plain language summaries is a valuable opportunity for researchers to promote knowledge uptake by breaking existing barriers to effective knowledge sharing.