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 1, Session 2
Learning from Leaders: a dive into the resources available to help you level up your skills.
1. During the talk by Rebecca Mbewe and Maria Dutarte, there was discussion around the need for free resources for patients and the role of EUPATI. Here are some anonymous quotes from participants.
“Thank you Rebecca and Maria for your overview of the EUPATI training - an amazing organization and resources!”
“Resources being free for patients is so important!”
2. Participants named feeling inspired by Rebecca’s story and expressed gratitude to Rebecca for sharing her experiences.
3. Some participants also voiced the impact PCORI has had on them. For example, one participant stated that they “hugely enjoyed PCORI last year, it was a superb learning opportunity and the discussions were excellent.”
4. Attendees discussed the importance of meaningful patient engagement and highlighted tools such as the IMHA patient engagement modules to learn about meaningful patient engagement.
“I love the patient engagement modules from IMHA—thanks team! I ask (expect 😉) all my research team members to complete these modules.”
“The modules are so informative, easy to navigate and definitely something everyone should experience, no matter where you are on in your journey. Just curious up to and including a professional researcher.”
5. There was discussion surrounding some of the great work being done on a regional scale in the patient engagement space, and the importance of initiatives at a local level while also recognising that scale up of information is required.
6. In general, participants emphasised the importance of role models in patient partnerships. As demonstrated by this comment:
“Thanks @Trudy and @ Linda for demonstrating so well the value and contribution of Patient Partners and where we need to go.”
Resources shared in the chat:
- Info on the session's speakers: https://bit.ly/PxP-Day1-Session2-Speakers
- More information on EUPATI Programme: https://learning.eupati.eu/mod/page/view.php?id=438&forceview=1
- EUPATI Online toolbox: https://toolbox.eupati.eu/
- EUPATI Glossary: https://toolbox.eupati.eu/glossary/
- PCORI (Patient-Centered Outcomes Research Institute) Ambassador Program information: https://www.pcori.org/engagement/engage-us/pcori-ambassador-program
- PCORI Engagement Rubric: https://www.pcori.org/sites/default/files/Engagement-Rubric.pdf
- PCORI Engagement Resources: https://www.pcori.org/engagement/engagement-resources/Engagement-Tool-Resource-Repository
- Rebecca’s Book: Our Stories Told By Us: Celebrating the African Contribution to the UK HIV Response: https://amzn.eu/d/fF8D9CX
- From Dr. Julia Abelson’s group: https://bmjopen.bmj.com/content/12/9/e061465