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 2, Session 2
Leading the way as a patient partner in research: examples of and tips and resources for patient-led research.
- People expressed enthusiasm about the tool being shared, describing it as an excellent resource for initiating meaningful dialogue and self-assessment within projects.
“'WOW' Sneha <Conference speaker>, you are an inspiration to us all. Amazing work”
- Participants shared appreciation for the scorecards, describing them as clear and easy to understand. Some people mentioned using them in specific settings such as university courses and indicated interest in sharing the scorecards more widely.
"These scorecards are excellent, and I'm excited to have them to share."
- There was a suggestion to track the usage of the scorecards globally, with the idea of having metrics on organizational websites to showcase how many members have adopted these tools.
"Would be great to see a metric on CMSS website as to how many members have shared these scorecards and how to use them at their Annual Meetings. Time for this to go global too."
- The conversation touched upon the challenge of preparing new patient partners to avoid overwhelm and finding ways to set boundaries. They emphasized the need for resources to support the training of patient partners was acknowledged.
“We have to find ways to prepare new patient partners to not be overwhelmed and to set their boundaries, it is a bit of a vicious circle. No training - overwhelm and limited influence, more training- risk of moulding.”