The More than a paper: ways to share research session left attendees with examples of sharing research and information that extend beyond typical research papers. Panelists shared examples of how research results can get into the hands of those who need it most and what that looks like.

Facilitator: Marco Giovanoli

Speakers: Brian A. Beh, Joan Carlini, Ahlia Griffiths

Recording is available here: https://www.youtube.com/watch?v=gwdedwRmsA8

We were very grateful to the attendees for their excellent engagement with the session. This page is a summary of some of the conversations from the live session and re-watch party. This summary also includes resources and anonymised quotes that were shared by attendees in the Zoom Chat and Q&A tab. We have collated everything here as part of our commitment to accessibility, so that people who attended the session have the opportunity to reflect on the content in a different format, and also so that people who were unable to join the session live can still have the opportunity to learn with and from their peers.

Please note that some of the quotes shared below have been attributed to one of the session speakers, as these are words that attendees shared in the Chat which particularly resonated with them.

This summary article was created with assistance from Microsoft Copilot, an AI-powered tool that helped organize, synthesize, and format content based on session notes and discussions. All notes were reviewed and anonymized by the PxP team before Copilot assisted with the task.

1. Respectful Terminology and Power Dynamics

Participants expressed concern about the use of terms like 'consumer' and 'stakeholder', highlighting how language can reinforce power imbalances and misrepresent the lived experience of patients.

“Yes the term ‘consumer’ to me implies a power relationship”

“Consumer implies there is a product, healthcare should NEVER be viewed as such in my opinion.”

“So many words for people living with disease...words do matter, but I wonder how much 'terminology' has hindered progress in advancing advocacy globally?”

2. Tokenism vs. Authentic

The issue of tokenism in patient engagement was raised repeatedly. Attendees called for deeper, more meaningful involvement of patients in research design and decision-making.

“From tokenism to authentic partners.”

“Real engagement means changing the architecture, not just the optics.”

“Healing and research are not separate—they never were.”

3. Lived Experience and Co-Design

Speakers emphasized the value of lived experience in shaping research and the importance of co-designing studies with patient partners.

“Same here Marco, my doctors learn from me sometimes. I have time and interest on one area of disease, and I love research.”

“When we co-design the research we need to remember to put into the REB [research ethics board] and letter of consent the ability to contact the participants.”

4. Technology, Artificial Intelligence (AI), and Data Privacy

The role of AI in research and communication was discussed, including concerns about data privacy and the potential for AI to personalize plain language summaries.

“In sociology, we are saying we will NOT record Lived experience because AI will steal it.”

“AI was amazing during this conference. The translation tool used on Zoom.”

“I wonder about the role of AI to create 'personalized plain language summaries' — not generic ones.”

Other Reflections

The session was described as informative, engaging, and thought-provoking. Attendees appreciated the candid discussion and humor, as well as the opportunity to connect with others navigating similar challenges.

“Wonderful message from Brian about showing the changes in the past 9 years! #fromtokenism to #authenticpartners”

“Be really comfortable to sit in discomfort.”