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Reposted by PxP (For Patients, By Patients)

Anntics @anntics.bsky.social · 27d

Having a great international chat with patients and researchers at #PxP25. Bold, daring, brave and powerful voices in health research

PxP (For Patients, By Patients) @pxphub.bsky.social · 27d

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

Event - PxP

Save the dates! Our free, virtual conference will be September 12-14 (for those in Europe, Africa or North and South America), or 13-15 (Asia and Oceania).

pxphub.org

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PxP (For Patients, By Patients) @pxphub.bsky.social · 27d

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

Event - PxP

Save the dates! Our free, virtual conference will be September 12-14 (for those in Europe, Africa or North and South America), or 13-15 (Asia and Oceania).

pxphub.org

1

PxP (For Patients, By Patients) @pxphub.bsky.social · 27d

Thank you for sharing Brett! We hope you enjoy the sessions when you get the chance to watch them 😊

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Reposted by PxP (For Patients, By Patients)

Brett Scholz @wingspan.bsky.social · 27d

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....

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PxP (For Patients, By Patients) @pxphub.bsky.social · 28d

“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

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PxP (For Patients, By Patients) @pxphub.bsky.social · 28d

“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

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PxP (For Patients, By Patients) @pxphub.bsky.social · 28d

“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

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PxP (For Patients, By Patients) @pxphub.bsky.social · 28d

“When we shift towards inclusion, we include people’s experiences and improve the research.” - BC Pomeroy #PxP25

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PxP (For Patients, By Patients) @pxphub.bsky.social · 28d

“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

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PxP (For Patients, By Patients) @pxphub.bsky.social · 28d

“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

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PxP (For Patients, By Patients) @pxphub.bsky.social · 28d

“Find your own voice and make it as quiet or as loud as you want it to be.” - Rita Schriemer #PxP25

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PxP (For Patients, By Patients) @pxphub.bsky.social · 28d

“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

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PxP (For Patients, By Patients) @pxphub.bsky.social · 28d

“You have to figure out where your boundaries are, and then advocate for yourself.” - Edith Mukantwari #PxP25

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PxP (For Patients, By Patients) @pxphub.bsky.social · 28d

“We presume that patients need training, and I think we should not assume that researchers know how to engage patients.” - Kwanele Asante #PxP25

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PxP (For Patients, By Patients) @pxphub.bsky.social · 28d

“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

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PxP (For Patients, By Patients) @pxphub.bsky.social · 28d

“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

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PxP (For Patients, By Patients) @pxphub.bsky.social · 28d

“For me it’s been beneficial & not beneficial to share that I’m a patient. As a psychologist professionally, opening up about living with a chronic illness identity has given me patient partner opportunities…There is also bias. I don’t look ‘sick enough'.’” - Maalvika Bhuvansunder

“For me it’s been beneficial and not beneficial to share that I’m a patient. As a psychologist professionally, opening up about living with a chronic illness identity has given me patient partner opportunities…There is also bias. I don’t look ‘sick enough,’ ‘not disabled enough.’” - Maalvika Bhuvansunder

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PxP (For Patients, By Patients) @pxphub.bsky.social · 28d

💚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 ⬇️

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PxP (For Patients, By Patients) @pxphub.bsky.social · 28d

💜Thank you so much to Kwanele Asante for guiding our second day of PxP 2025 as the conference host, and to the incredible speakers for today’s sessions. 👏. Thank you for everything you shared – for your wisdom, honesty and practical examples for doing better research.

Day 2: Setting up for success and inspiring others. Grid of photos of Day 2 speakers at PxP 2025.

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PxP (For Patients, By Patients) @pxphub.bsky.social · 28d

For Patients, By Patients

Day 2 - Discussing all things #PatientEngagement #PPI #PatientPartners and more is in session!

If you want to join, it's free!

Sign-up here ➡️ pxphub.org/event/

And if you missed day 1, head to the #Rewatch parties 🥳

Event - PxP

Save the dates! Our free, virtual conference will be September 12-14 (for those in Europe, Africa or North and South America), or 13-15 (Asia and Oceania).

pxphub.org

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PxP (For Patients, By Patients) @pxphub.bsky.social · 29d

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!

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PxP (For Patients, By Patients) @pxphub.bsky.social · 29d

“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

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PxP (For Patients, By Patients) @pxphub.bsky.social · 29d

“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

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PxP (For Patients, By Patients) @pxphub.bsky.social · 29d

“Expertise makes the distinction between our experience and our expertise like others on the team (e.g. a biostatistician).” - Greg Merritt

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PxP (For Patients, By Patients) @pxphub.bsky.social · 29d

“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

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