๐How 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...
@pxphub.bsky.social
๐For Patients, By Patients ๐ The PxP initiative brings together resources for the patient engagement community in health research.
๐How 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...
๐How are research teams engaging patients as partners in different parts of the world?
โ๏ธCheck 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.
๐ฅCheck out this webinar recording from the #PxP25 conference: www.youtube.com/watch?v=-xoH...
๐ญHow 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 werenโt 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 yearโs conference:
pxphub.org/pxp-2025-art...
๐ 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 supportedโno matter their experience or role.
๐ฅ 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.
๐ฅCheck 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?
๐Watch 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
12.09.2025 03:51 โ ๐ 4 ๐ 1 ๐ฌ 0 ๐ 0At 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 ๐ 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 ๐
12.09.2025 00:14 โ ๐ 1 ๐ 0 ๐ฌ 0 ๐ 0I 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....
12.09.2025 00:11 โ ๐ 3 ๐ 1 ๐ฌ 1 ๐ 0โAcademia 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.โ - Michelle Phoenix #PxP25
โAcademia 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.โ - Michelle Phoenix #PxP25
11.09.2025 01:20 โ ๐ 2 ๐ 2 ๐ฌ 0 ๐ 1โIโve 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.โ - Manoj Lalu #PxP25
โIโve 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.โ - Manoj Lalu #PxP25
11.09.2025 01:20 โ ๐ 2 ๐ 1 ๐ฌ 1 ๐ 0โAs 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.โ - Anna Samson #PxP25
โAs 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.โ - Anna Samson #PxP25
11.09.2025 01:20 โ ๐ 1 ๐ 1 ๐ฌ 1 ๐ 0โWhen we shift towards inclusion, we include peopleโs experiences and improve the research.โ - BC Pomeroy #PxP25
โWhen we shift towards inclusion, we include peopleโs experiences and improve the research.โ - BC Pomeroy #PxP25
11.09.2025 01:20 โ ๐ 1 ๐ 1 ๐ฌ 1 ๐ 0โEvidence-based advocacy helps understand patient needs in a systematic manner โฆ and it generally has a greater impact.โ โYou can point to national and global disparities using evidence-based advocacy.โ - Rachel Giles #PxP25
โEvidence-based advocacy helps understand patient needs in a systematic manner โฆ and it generally has a greater impact.โ โYou can point to national and global disparities using evidence-based advocacy.โ - Rachel Giles #PxP25
11.09.2025 01:20 โ ๐ 1 ๐ 1 ๐ฌ 1 ๐ 0โWhen we look back at this time, I hope we look back and think about how bizarre it was that patient partners werenโt part of all research.โ - Knoll Larkin #PxP25
โWhen we look back at this time, I hope we look back and think about how bizarre it was that patient partners werenโt part of all research.โ - Knoll Larkin #PxP25
11.09.2025 01:20 โ ๐ 2 ๐ 2 ๐ฌ 1 ๐ 0โFind your own voice and make it as quiet or as loud as you want it to be.โ - Rita Schriemer #PxP25
โFind your own voice and make it as quiet or as loud as you want it to be.โ - Rita Schriemer #PxP25
11.09.2025 01:20 โ ๐ 2 ๐ 2 ๐ฌ 1 ๐ 0โIโve found over the years, that once Iโm comfortable sharing my other identities, then Iโm more comfortable sharing my disability in a way that makes sense for me and in a way that others perceive it.โ - Logan Wong #PxP25
โIโve found over the years, that once Iโm comfortable sharing my other identities, then Iโm more comfortable sharing my disability in a way that makes sense for me and in a way that others perceive it.โ - Logan Wong #PxP25
11.09.2025 01:20 โ ๐ 1 ๐ 1 ๐ฌ 1 ๐ 0โYou have to figure out where your boundaries are, and then advocate for yourself.โ - Edith Mukantwari #PxP25
โYou have to figure out where your boundaries are, and then advocate for yourself.โ - Edith Mukantwari #PxP25
11.09.2025 01:20 โ ๐ 1 ๐ 1 ๐ฌ 1 ๐ 0โWe presume that patients need training, and I think we should not assume that researchers know how to engage patients.โ - Kwanele Asante #PxP25
โWe presume that patients need training, and I think we should not assume that researchers know how to engage patients.โ - Kwanele Asante #PxP25
11.09.2025 01:20 โ ๐ 1 ๐ 1 ๐ฌ 1 ๐ 0โItโs important to make sure you ask the patient partners youโre 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.โ - Maureen Bult-Mulder #PxP25
โItโs important to make sure you ask the patient partners youโre 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.โ - Maureen Bult-Mulder #PxP25
11.09.2025 01:20 โ ๐ 1 ๐ 1 ๐ฌ 1 ๐ 0โBeing a patient is a job - itโs like a full time job.โ โItโs possible to be an insider and an outsider [if youโre a patient and a researcher].โ - Zahra Sherwani #PxP25
โBeing a patient is a job - itโs like a full time job.โ โItโs possible to be an insider and an outsider [if youโre a patient and a researcher].โ - Zahra Sherwani #PxP25
11.09.2025 01:20 โ ๐ 2 ๐ 2 ๐ฌ 1 ๐ 0โFor me itโs been beneficial and not beneficial to share that Iโm a patient. As a psychologist professionally, opening up about living with a chronic illness identity has given me patient partner opportunitiesโฆThere is also bias. I donโt look โsick enough,โ โnot disabled enough.โโ - Maalvika Bhuvansunder
โFor me itโs been beneficial & not beneficial to share that Iโm a patient. As a psychologist professionally, opening up about living with a chronic illness identity has given me patient partner opportunitiesโฆThere is also bias. I donโt look โsick enough'.โโ - Maalvika Bhuvansunder
11.09.2025 01:20 โ ๐ 1 ๐ 1 ๐ฌ 1 ๐ 0๐In 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 โฌ๏ธ
11.09.2025 01:20 โ ๐ 1 ๐ 1 ๐ฌ 1 ๐ 0Day 2: Setting up for success and inspiring others. Grid of photos of Day 2 speakers at PxP 2025.
๐Thank you so much to Kwanele Asante for guiding our second day of PxP 2025 as the conference host, and to the incredible speakers for todayโs sessions. ๐. Thank you for everything you shared โ for your wisdom, honesty and practical examples for doing better research.
11.09.2025 01:20 โ ๐ 5 ๐ 2 ๐ฌ 1 ๐ 0