How has patient engagement changed in your region over the last 3-12 months?
1/ We’re undertaking an informal scan of the current status of patient engagement across the globe. This will help us shape the next phase of PxP and determine new goals.
💭Thoughts can be shared directly with our team by emailing: contact@pxphub.org
3/ Check out our latest newsletter here for an update on the PxP funding model: mailchi.mp/pxphub/pxp-n...
#PPI #ConsumerInvolvement #PatientEngagement
2/ Suggested questions as a starting point:
🟣How has patient engagement changed in your region over the last 3-12 months?
🟢Do you see any gaps that you hope PxP might meet?
🟣What are your aspirations for PxP?
How has patient engagement changed in your region over the last 3-12 months?
1/ We’re undertaking an informal scan of the current status of patient engagement across the globe. This will help us shape the next phase of PxP and determine new goals.
💭Thoughts can be shared directly with our team by emailing: contact@pxphub.org
🚂How do you get research to the people who can learn or use something from it?
Get some ideas here: www.youtube.com/watch?v=gwde...
How are patients are changing the research system from within?
www.youtube.com/watch?v=Wf5v...
🌎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...
💭How do you navigate owning your lived experience as one aspect of your identity?
www.youtube.com/watch?v=F39U...
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...
📚 Read the chat summary: pxphub.org/laying-the-g...
#PxP25 #PatientPartnership #HealthResearch
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
Looking for a case study on co-design? PxP Australia featured an insightful presentation by Joan Carlini and Letisha Living, facilitated by Janelle Bowden.
Their #ConsumerInvolvement project used Lego!
Intrigued?
Watch the session back here: www.youtube.com/watch?si=UQV...
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
Thank you for sharing Brett! We hope you enjoy the sessions when you get the chance to watch them 😊
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