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PxP 2024 Day 1 Session 3: The participant Chat

Taking care as a patient partner with Shyam Muthuramalingam, Rae Martens and Christopher Munt.

Words by PxP attendees, summary by Rabaab Khehra

Across the three days of PxP, we had some meaningful conversations and resource sharing taking place in the participant chat. In this summary, we aim to capture those discussions in a format that is anonymous and easy to digest. We recognise that this summary does not capture the full richness and level of detail of the conference chat. However, we hope this is a starting point for continuing these important conversations over the coming months.

Discussions:

1. Participants noted that an important part of patient engagement is being selective in who patient partners choose to work with. Not only is it important to recognize the expertise of patient partners but also, diverse teams that create an environment for everyone to learn. They also named taking time to reflect on whether the experience will help a patient partner achieve their goals for patient engagement.

“Seeing a project pivot based on my expertise, especially where it diverges from the rest of the team…[B]eing publicly recognized by others on the team as someone with unique expertise that is integral to the work”

“, a measurable tool is clarity on role, compensation, how to contribute, who to go to if things aren’t going well (outside the team lead)”

2. People named the need for community within patient engagement. They discussed a need for other people who share the same experiences and can validate each other.

“Being connected to others doing this work is a huge part of my life. They understand why this is important and can be such a great reality check when things aren’t going well”

3. Accessibility also became a topic of discussion. Attendees named psychological safety as one of the pillars of accessibility. Naming that the lack of such creates extra layers of education that a patient partner may not be prepared to, or want to, provide.

“[A]ccessibility isn’t universal. Some barriers for one person could be an enabler for another one. Our accessibility has to be a broad tent and defined by us, not others”

Resources shared in the chat: