Green and purple speech bubbles against a graded background of green and purple.

PxP 2024 Day 3 Session 2: The participant Chat

Highlighting other types of (often non-academic) patient partnerships with Runcie Chidebe, Ella Balasa, Thelma Barber and Zac Miles.

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. People shared different experiences they have had with patient partnershipincluding developing standards for accreditation, health technology assessment to help determine feasibility and priorities for tech investments, and delphi studies.

2. Participants used the chat to share their lived experiences and network with other participants, and they also shared their social media handles with each other to stay in contact.

3. Individuals discussed that opportunities in patient partnership are regularly unpaid, although can sometimes lead on to paid opportunities, but they find the work to be rewarding regardless. Others shared experiences of wanting to be compensated for their work. [Editors note: the third session on Day 3 of the conference explored compensation in more detail, including discussions about whether volunteering as a patient partner can exclude people from groups that have been historically (or continue to be) harmed or disadvantaged by research.]

“I really like that question 'Is this an opportunity that is going to be compensated". It feels like a less personal way of asking the question. (Noting it would be great if this information…was offered upfront without having to ask the question).”

Resources shared in the chat: