PxP (For Patients, By Patients)

PxP (For Patients, By Patients)

@pxphub.bsky.social

👉For Patients, By Patients 👈 The PxP initiative brings together resources for the patient engagement community in health research.

249 Followers 136 Following 72 Posts Joined Dec 2024
3 months ago
YouTube
More than a paper: ways to share research YouTube video by PxP For Patients, By Patients

🚂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...

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3 months ago
YouTube
Patients leading the way: research from within YouTube video by PxP For Patients, By Patients

How are patients are changing the research system from within?
www.youtube.com/watch?v=Wf5v...

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3 months ago
YouTube
At the cutting edge: innovations in patient engagement YouTube video by PxP For Patients, By Patients

🌎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...

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3 months ago
YouTube
Stronger together: building capacity on research teams YouTube video by PxP For Patients, By Patients

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...

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3 months ago
YouTube
Owning your lived experience: patient partner as part of your identity YouTube video by PxP For Patients, By Patients

💭How do you navigate owning your lived experience as one aspect of your identity?

www.youtube.com/watch?v=F39U...

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3 months ago
Preview
PxP 2025 Artworks - PxP PxP 2025 artworks created by visual alchemist Candace Ramjohn during the annual conference, including impactful quotes...

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...

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3 months ago
Preview
Laying the Groundwork Chat Summary PxP 2025 - PxP Roles in research was an insightful session at PxP 2025. Read the anonymised summary of discussion and resources shared...

📚 Read the chat summary: pxphub.org/laying-the-g...

#PxP25 #PatientPartnership #HealthResearch

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3 months ago
YouTube
Laying the groundwork: setting up for success in patient partnership YouTube video by PxP For Patients, By Patients

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...

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4 months ago
YouTube
Journeys of impact: pathways of patient partners YouTube video by PxP For Patients, By Patients

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

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4 months ago
YouTube
Global voices, local impact: Patient Engagement in research around the world YouTube video by PxP For Patients, By Patients

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

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4 months ago
Preview
PxP Australia 2025 YouTube video by PxP For Patients, By Patients

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...

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6 months ago

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

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6 months ago
Preview
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).

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

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6 months ago

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

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6 months ago

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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6 months ago
“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

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6 months ago
“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

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6 months ago
“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

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6 months ago
“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

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6 months ago
“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

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6 months ago
“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

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6 months ago
“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

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6 months ago
“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

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6 months ago
“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

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6 months ago
“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

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6 months ago
“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

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6 months ago
“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

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6 months ago
“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

“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

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6 months ago

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

💜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.

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