Journeys of Impact Chat Summary PxP 2025

This summary captures key themes, reflections, and resources shared during the PxP 2025 session "Journeys of Impact: pathways of patient partners”. Speakers shared how they’ve found their roles in research as patient partners. They discussed their journeys, including how they started, their experiences across different research spaces, and the lessons they learned along the way. The session featured patient partners with varying years of experience.

Facilitator: Simon Stones

Speakers: Marquetta Frost and Joel Nelson

Recording is available here:  https://www.youtube.com/watch?v=2Rht0OAVSR8&t=22s

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. 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. The Power of Lived Experience

Speakers and attendees shared powerful stories of navigating illness, advocacy, and research. From dialysis and transplants to stroke recovery and invisible conditions, the session emphasized how lived experience can be a source of purpose and impact.

“My advocacy and giving insight into research has been a ‘good use’ and purpose of what could have been a downward spiral of lived experience.”

“We are not just numbers. We are faces. We deal with this every day.”

The concept of the “accidental advocate” resonated strongly, with many attendees reflecting on how personal health journeys led them to advocacy and research.

2. Capacity, Boundaries, and Saying No

A recurring theme was the importance of recognizing personal capacity and learning to say no when engagement doesn’t feel meaningful or sustainable.

“I have recently learned to say no if I don't see that I would add value to the project.”

“If it doesn't feel right in my gut, I say no.”

“You have the power to say no. You have the power to challenge.”

Attendees discussed the emotional labor of patient engagement and the need to invest energy where it matters most.

3. Tokenism and Authentic Engagement

The challenge of tokenism was addressed directly, with attendees and speakers calling for deeper, more authentic partnerships.

“You can't fight tokenism on your own.”

“With all due respect is usually the precursor to no respect.”

“Celebrate the wins. Celebrate the inputs that get used, because they don't always use the contributions.”

The importance of mentorship and peer support was highlighted as a way to combat isolation and burnout.

4. Evolving Roles: From Patient to Researcher

Several attendees shared their journeys from patient partners to researchers, including those pursuing PhDs or contributing to academic projects.

“It’s creating an interesting blurring of the lines about the hats people are wearing in research.”

“Amazing to learn about myself, and to educate clinicians about me.”

Challenges around funding and recognition for lived experience researchers were also discussed.

5. Community, Connection, and Confidence

The session underscored the value of community in building confidence and creating opportunities.

“Only together do we push the door from ajar to wide open.”

“By meeting others, my confidence grew.”

“It is by saying yes, throwing in everything you have, that I have got to this position.”

International participation and shared experiences created a sense of solidarity and mutual support.

6. Compensation and Equity

Compensation emerged as a critical issue, with attendees discussing barriers to fair payment and the need for better infrastructure.

“No one likes the compensation discussion, but it is really important.”

“The ‘black economy’ happening with gift cards keeps it as a hobby.”