🌎How are research teams engaging patients as partners in different parts of the world?
☑️Check out case studies from Brazil and Australia in this session recording from the #PxP25 conference in September: www.youtube.com/watch?v=LBW8...
Learn more about evidence-based advocacy and using justice-informed, trauma-informed approaches to patient engagement in health research.
🎥Check out this webinar recording from the #PxP25 conference: www.youtube.com/watch?v=-xoH...
At #PxP25, we hosted three unique sessions that weren’t recorded for our YouTube channel to create a safe space for open dialogue. Check out the anonymized illustrations from these sessions here, along with other artwork from this year’s conference:
pxphub.org/pxp-2025-art...
How can you lay the groundwork for successful patient partnership?
#PxP25 speakers shared practical strategies for building research teams where patient partners feel prepared and supported—no matter their experience or role.
🎥 Watch back: www.youtube.com/watch?v=EnJ6...
Do you feel like an "accidental advocate"? During #PxP25, speakers and attendees spoke about how their personal health journeys led them to advocacy and research in ways they had never imagined.
🎥Check out this session recording to learn about pathways of patient partners: youtu.be/2Rht0OAVSR8
What are some unique challenges and opportunities for patient engagement in research in different parts of the world?
👀Watch back this session from day 1 of #PxP25
youtu.be/xJwAKSoHGNs
#PPI #PatientEngagement #ConsumerInvolvement
Having a great international chat with patients and researchers at #PxP25. Bold, daring, brave and powerful voices in health research
Having a great international chat with patients and researchers at #PxP25. Bold, daring, brave and powerful voices in health research
At the cutting edge: innovations in patient engagement
The first sessions of #PxP25 day 3 is underway!
Join us now, or consider coming to catch-up at a rewatch party 👉 pxphub.org/event/
#PatientEngagement #ConsumerEngagement #ForPatientsByPatients
I haven't managed to catch up with Days 1 and 2 of #PXP25 just yet...but it sounds like I'll need to go through some interesting conversations. This quote from Michelle particularly reminds me of some of our earlier work on pushing back on institutional barriers: doi.org/10.1111/inm....
“Academia is not conducive to the kinds of relationships we need to create and the safety we need to create for patient engagement. I have started to build in longer deadlines, especially at the start of the research project.” - Michelle Phoenix #PxP25
“Academia is not conducive to the kinds of relationships we need to create and the safety we need to create for patient engagement. I have started to build in longer deadlines, especially at the start of the research project.” - Michelle Phoenix #PxP25
![“I’ve learned to not assume what people [patient partners] might be interested in or helping out with. We try to keep the door open in terms of what they would like to contribute to a project.” - Manoj Lalu #PxP25](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:diqfaykivhvyyba66w5ybch5/bafkreie744sogbp6q3akkaihdpcih7o5fzbt52xbsn65q4kxeelbhkfxcy)
“I’ve learned to not assume what people [patient partners] might be interested in or helping out with. We try to keep the door open in terms of what they would like to contribute to a project.” - Manoj Lalu #PxP25
“I’ve learned to not assume what people [patient partners] might be interested in or helping out with. We try to keep the door open in terms of what they would like to contribute to a project.” - Manoj Lalu #PxP25
“As a patient partner, in projects where there have been longer timelines, that has helped a lot. Having a bit more time to meaningfully participate is so helpful.” - Anna Samson #PxP25
“As a patient partner, in projects where there have been longer timelines, that has helped a lot. Having a bit more time to meaningfully participate is so helpful.” - Anna Samson #PxP25
“When we shift towards inclusion, we include people’s experiences and improve the research.” - BC Pomeroy #PxP25
“When we shift towards inclusion, we include people’s experiences and improve the research.” - BC Pomeroy #PxP25
“Evidence-based advocacy helps understand patient needs in a systematic manner … and it generally has a greater impact.” “You can point to national and global disparities using evidence-based advocacy.” - Rachel Giles #PxP25
“Evidence-based advocacy helps understand patient needs in a systematic manner … and it generally has a greater impact.” “You can point to national and global disparities using evidence-based advocacy.” - Rachel Giles #PxP25
“When we look back at this time, I hope we look back and think about how bizarre it was that patient partners weren’t part of all research.” - Knoll Larkin #PxP25
“When we look back at this time, I hope we look back and think about how bizarre it was that patient partners weren’t part of all research.” - Knoll Larkin #PxP25
“Find your own voice and make it as quiet or as loud as you want it to be.” - Rita Schriemer #PxP25
“Find your own voice and make it as quiet or as loud as you want it to be.” - Rita Schriemer #PxP25
“I’ve found over the years, that once I’m comfortable sharing my other identities, then I’m more comfortable sharing my disability in a way that makes sense for me and in a way that others perceive it.” - Logan Wong #PxP25
“I’ve found over the years, that once I’m comfortable sharing my other identities, then I’m more comfortable sharing my disability in a way that makes sense for me and in a way that others perceive it.” - Logan Wong #PxP25
“You have to figure out where your boundaries are, and then advocate for yourself.” - Edith Mukantwari #PxP25
“You have to figure out where your boundaries are, and then advocate for yourself.” - Edith Mukantwari #PxP25
“We presume that patients need training, and I think we should not assume that researchers know how to engage patients.” - Kwanele Asante #PxP25
“We presume that patients need training, and I think we should not assume that researchers know how to engage patients.” - Kwanele Asante #PxP25
“It’s important to make sure you ask the patient partners you’re working with how they want to get there together- and be open to that. There may be different ways to work together based on their needs.” - Maureen Bult-Mulder #PxP25
“It’s important to make sure you ask the patient partners you’re working with how they want to get there together- and be open to that. There may be different ways to work together based on their needs.” - Maureen Bult-Mulder #PxP25
![“Being a patient is a job - it’s like a full time job.” “It’s possible to be an insider and an outsider [if you’re a patient and a researcher].” - Zahra Sherwani #PxP25](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:diqfaykivhvyyba66w5ybch5/bafkreigophoki5hkol3jrljyomnkdiyg5jhzej6wdccdpjqt4k2i22rupi)
“Being a patient is a job - it’s like a full time job.” “It’s possible to be an insider and an outsider [if you’re a patient and a researcher].” - Zahra Sherwani #PxP25
“Being a patient is a job - it’s like a full time job.” “It’s possible to be an insider and an outsider [if you’re a patient and a researcher].” - Zahra Sherwani #PxP25
💚In the thread below, we share a selection of quotes from today, but we'd love to hear from you! Share your favourite quotes and key take-homes from Day 2 of #PxP25 in the comments below ⬇️
The #PxP25 re-watch parties will be starting in a little under an hour. There are three sessions - and the timings should work well for people in parts of Asia and Oceania, or people joining us after work in West Coast Americas. Looking forward to seeing some of you there!
“What we bring to the community and decision makers is that breadth of lived experience. Researchers want to partner with us because we have knowledge, experiences, and values that they don’t have.” - Neil Bertelsen
“What we bring to the community and decision makers is that breadth of lived experience. Researchers want to partner with us because we have knowledge, experiences, and values that they don’t have.” - Neil Bertelsen #PxP25
“Like the idea of us as a global patient movement identifying institutions that claim to be doing health equity work and holding them accountable to these claims.” - Kwanele Asante #PxP25
“Like the idea of us as a global patient movement identifying institutions that claim to be doing health equity work and holding them accountable to these claims.” - Kwanele Asante #PxP25
“With each passing involvement, my confidence grows in my ability and my place in the process….Crucially I can say no to project that don’t feel right, feel tokenistic, or not right for my family.” - Joel Nelson #PxP25
“With each passing involvement, my confidence grows in my ability and my place in the process….Crucially I can say no to project that don’t feel right, feel tokenistic, or not right for my family.” - Joel Nelson #PxP25
“Even though we may all live with the same disease, doctors need to know that our experiences are all different. We’re not just numbers.” - Marquetta Frost #PxP25
“Even though we may all live with the same disease, doctors need to know that our experiences are all different. We’re not just numbers.” - Marquetta Frost #PxP25
“You have power, you have expertise, it’s valued by lots of people. If that situation isn’t right, you can walk away and you will be valued somewhere else.” - Simon Stones #PxP25
“You have power, you have expertise, it’s valued by lots of people. If that situation isn’t right, you can walk away and you will be valued somewhere else.” - Simon Stones #PxP25
