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PxP 2023 Day 3 Session 3: The participant Chat

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.

Day 3, Session 3


1. Participants expressed interest in becoming published as a patient partner and how “[t]he most exciting thing is seeing the patient voice coming to the peer reviewed literature”. People discussed how their involvement in research has allowed them to share more about arthritis research with their communities.

2. There were discussions around lack of access to medical literature. They noted that in some instances, they are not even able to access papers they contributed to.

“people don't have access - so many peer-reviewed articles are beyond paywalls”

“And it's really frustrating. I've been thanked in one paper for being part of a committee and got an email alert from academia today saying it's been cited or something. I'm not sure- because I don't have access to it. I've got no idea what they actually said about it!”

3. Attendees spoke to patient blogs acting as a source for research topics and a way for researchers and clinicians to learn what different individuals may be living with.

“Stories complement the research and contextualizes research on our conditions”

Resources shared in the chat: