At the Cutting Edge Chat Summary PxP 2025

The session At the cutting edge: innovations in patient engagement was intended to help attendees discover innovative ways research teams are engaging patients as partners in different parts of the world. Global examples where patients are informing clinical trials space and where parents and families have identified research gaps and are moving towards filling them were presented. Presenters shared their motivations, outcomes, and lessons learned along the way. These examples show where different places are with respect to patient engagement in research.

Facilitator: Agnes Nsofwa

Speakers: Joanne Kershaw, Patricia de Luca, Aline Marcadenti de Oliveira

Recording is available here: https://www.youtube.com/watch?v=LBW8AnKtDpU&t

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. Listening as Innovation

Participants reflected on how genuine listening is still considered innovative in 2025, underscoring the need for deeper cultural shifts in research and policy.

"Thanks so much Joanne for sharing! I can’t help but feel heavy when I reflect on how shifting from consultation to genuine listening is still considered innovative in 2025! (Not a put down of the important work you’re doing at all — more a reminder that if listening is at the cutting edge, then we have SO MUCH more work we need to do!!)"

"We are using listening as a mechanism to learn, build understanding and gather evidence. We are using these opportunities to listen and learn to catalyse change and accountability across systems and stakeholder groups. Listening properly is the foundation for fundamental change. Change cannot happen without listening first."

2. The Long Table Format

The Long Table format was introduced as a creative and inclusive method for dialogue between patients, families, and healthcare professionals.

"The long table approach is fantastic! Obviously it’s important that the right people are in the room. Did you have any trouble with content experts who were resistant to attending and trying this different approach, and how did you address this?"

"Do you prepare the various attendees (both families and the healthcare stakeholders) before the Long Table? If you did, what did you do? Also how do you capture what was discussed at the Long Table?"

"Yes, we did prepare the various attendees, and with tailored communications, even individual phonecalls with attendees. We recorded the sound to produce a report."

3. Patient Authorship and Discoverability

The session highlighted the importance of recognizing patient authorship in academic publications to improve visibility and impact.

"For future publications with your patient representatives, would you consider asking them to add 'Patient Author' as just one of their affiliations (ie, can still add patient organisation affiliations)? This allows patient-authored publications to be found via a PubMed search (free, global, current database) so that we can find them and learn from them...and convince skeptics that patients CAN author publications that can affect patient care!"

"The BMJ and major publishers are now using / encouraging 'Patient Author' affiliation and we are seeing a surge in discoverable patient-authored publications."

Other Reflections

Attendees expressed appreciation for the innovative approaches shared and emphasized the importance of continuing to evolve engagement practices.

"Love this—new and different. Great to listen to this success story."

"I didn’t know about childhood dementia. I’m so happy they are sharing about this."