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PxP 2023 Day 3 Session 2: 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 2

Discussions:

1. People discussed lack of representation in research and a need for safe spaces, partly due to historical harm. The conversation also emphasised the importance of inclusion.

2. Participants emphasized the importance of partnership and empathy within working relationships- specifically around researchers and patient engagement. They discussed how community building and can help reduce barriers.

“We need more “walking in their shoes” approaches in patient inclusion.”

“I think many in academia don't realize how unsafe the spaces are that they are trying to invite partners into, which is such a barrier and could be harmful. Going into the community is so valuable.”

3. Individuals noted that it is important for researchers to believe that patient input and engagement is valuable. One person shared that they were “glad to hear that as researchers you are echoing back how the patient participants have contributed to [researcher’s] work.” One important way to show that patient’s expertise are [sic] valued, people thought, was through equitable compensation for their work.

“When I review [a] funding application I always look for costing allocated for patient engagement.”

“It is changing from what I see, at least in Aotearoa the funding bodies have made it [patient engagement] compulsory, which has made a huge difference, researchers are all in a continuum in terms of patient engagement, I'm hopeful that it will change for good.”

4. One person also named the importance of highlighting how chronic pain impacts not just the individual but also their family and community.

Resources shared in the chat: