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PxP (For Patients, By Patients)

@pxphub.bsky.social

๐Ÿ‘‰For Patients, By Patients ๐Ÿ‘ˆ The PxP initiative brings together resources for the patient engagement community in health research.

244 Followers  |  136 Following  |  72 Posts  |  Joined: 03.12.2024  |  2.4236

Latest posts by pxphub.bsky.social on Bluesky

More than a paper: ways to share research
YouTube video by PxP For Patients, By Patients More than a paper: ways to share research

๐Ÿš‚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...

02.12.2025 01:00 โ€” ๐Ÿ‘ 2    ๐Ÿ” 2    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0
Patients leading the way: research from within
YouTube video by PxP For Patients, By Patients Patients leading the way: research from within

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

02.12.2025 00:31 โ€” ๐Ÿ‘ 2    ๐Ÿ” 1    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0
At the cutting edge: innovations in patient engagement
YouTube video by PxP For Patients, By Patients At the cutting edge: innovations in patient engagement

๐ŸŒŽHow are research teams engaging patients as partners in different parts of the world?

โ˜‘๏ธCheck out case studies from Brazil and Australia in this session recording from the #PxP25 conference in September: www.youtube.com/watch?v=LBW8...

02.12.2025 00:07 โ€” ๐Ÿ‘ 1    ๐Ÿ” 1    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0
Stronger together: building capacity on research teams
YouTube video by PxP For Patients, By Patients Stronger together: building capacity on research teams

Learn more about evidence-based advocacy and using justice-informed, trauma-informed approaches to patient engagement in health research.

๐ŸŽฅCheck out this webinar recording from the #PxP25 conference: www.youtube.com/watch?v=-xoH...

01.12.2025 23:38 โ€” ๐Ÿ‘ 2    ๐Ÿ” 1    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0
Owning your lived experience: patient partner as part of your identity
YouTube video by PxP For Patients, By Patients Owning your lived experience: patient partner as part of your identity

๐Ÿ’ญHow do you navigate owning your lived experience as one aspect of your identity?

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

01.12.2025 23:11 โ€” ๐Ÿ‘ 3    ๐Ÿ” 1    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0
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 werenโ€™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 yearโ€™s conference:
pxphub.org/pxp-2025-art...

01.12.2025 22:55 โ€” ๐Ÿ‘ 2    ๐Ÿ” 1    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0
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...

๐Ÿ“š Read the chat summary: pxphub.org/laying-the-g...

#PxP25 #PatientPartnership #HealthResearch

18.11.2025 00:28 โ€” ๐Ÿ‘ 2    ๐Ÿ” 1    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0
Laying the groundwork: setting up for success in patient partnership
YouTube video by PxP For Patients, By Patients Laying the groundwork: setting up for success in patient partnership

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 supportedโ€”no matter their experience or role.

๐ŸŽฅ Watch back: www.youtube.com/watch?v=EnJ6...

18.11.2025 00:28 โ€” ๐Ÿ‘ 4    ๐Ÿ” 2    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
Journeys of impact: pathways of patient partners
YouTube video by PxP For Patients, By Patients Journeys of impact: pathways of patient partners

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.

๐ŸŽฅCheck out this session recording to learn about pathways of patient partners: youtu.be/2Rht0OAVSR8

03.11.2025 22:09 โ€” ๐Ÿ‘ 2    ๐Ÿ” 0    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0
Global voices, local impact: Patient Engagement in research around the world
YouTube video by PxP For Patients, By Patients Global voices, local impact: Patient Engagement in research around the world

What are some unique challenges and opportunities for patient engagement in research in different parts of the world?

๐Ÿ‘€Watch back this session from day 1 of #PxP25
youtu.be/xJwAKSoHGNs

#PPI #PatientEngagement #ConsumerInvolvement

29.10.2025 17:43 โ€” ๐Ÿ‘ 2    ๐Ÿ” 0    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0
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...

22.10.2025 17:54 โ€” ๐Ÿ‘ 2    ๐Ÿ” 0    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0

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€” ๐Ÿ‘ 4    ๐Ÿ” 1    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0
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 ๐Ÿ‘‰ pxphub.org/event/

#PatientEngagement #ConsumerEngagement #ForPatientsByPatients

12.09.2025 00:21 โ€” ๐Ÿ‘ 1    ๐Ÿ” 0    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 1

Thank you for sharing Brett! We hope you enjoy the sessions when you get the chance to watch them ๐Ÿ˜Š

12.09.2025 00:14 โ€” ๐Ÿ‘ 1    ๐Ÿ” 0    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0

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....

12.09.2025 00:11 โ€” ๐Ÿ‘ 3    ๐Ÿ” 1    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
โ€œAcademia 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

โ€œAcademia 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

โ€œAcademia 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€” ๐Ÿ‘ 2    ๐Ÿ” 2    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 1
โ€œIโ€™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.โ€ - Manoj Lalu #PxP25

โ€œIโ€™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.โ€ - Manoj Lalu #PxP25

โ€œIโ€™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.โ€ - Manoj Lalu #PxP25

11.09.2025 01:20 โ€” ๐Ÿ‘ 2    ๐Ÿ” 1    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
โ€œAs 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

โ€œAs 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

โ€œAs 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€” ๐Ÿ‘ 1    ๐Ÿ” 1    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
โ€œWhen we shift towards inclusion, we include peopleโ€™s experiences and improve the research.โ€ - BC Pomeroy #PxP25

โ€œWhen we shift towards inclusion, we include peopleโ€™s experiences and improve the research.โ€ - BC Pomeroy #PxP25

โ€œWhen we shift towards inclusion, we include peopleโ€™s experiences and improve the research.โ€ - BC Pomeroy #PxP25

11.09.2025 01:20 โ€” ๐Ÿ‘ 1    ๐Ÿ” 1    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
โ€œEvidence-based advocacy helps understand patient needs in a systematic manner โ€ฆ and it generally has a greater impact.โ€ โ€œYou can point to national and global disparities using evidence-based advocacy.โ€ - Rachel Giles #PxP25

โ€œEvidence-based advocacy helps understand patient needs in a systematic manner โ€ฆ and it generally has a greater impact.โ€ โ€œYou can point to national and global disparities using evidence-based advocacy.โ€ - Rachel Giles #PxP25

โ€œEvidence-based advocacy helps understand patient needs in a systematic manner โ€ฆ and it generally has a greater impact.โ€ โ€œYou can point to national and global disparities using evidence-based advocacy.โ€ - Rachel Giles #PxP25

11.09.2025 01:20 โ€” ๐Ÿ‘ 1    ๐Ÿ” 1    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
โ€œWhen we look back at this time, I hope we look back and think about how bizarre it was that patient partners werenโ€™t part of all research.โ€ - Knoll Larkin #PxP25

โ€œWhen we look back at this time, I hope we look back and think about how bizarre it was that patient partners werenโ€™t part of all research.โ€ - Knoll Larkin #PxP25

โ€œWhen we look back at this time, I hope we look back and think about how bizarre it was that patient partners werenโ€™t part of all research.โ€ - Knoll Larkin #PxP25

11.09.2025 01:20 โ€” ๐Ÿ‘ 2    ๐Ÿ” 2    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
โ€œFind your own voice and make it as quiet or as loud as you want it to be.โ€ - Rita Schriemer #PxP25

โ€œFind your own voice and make it as quiet or as loud as you want it to be.โ€ - Rita Schriemer #PxP25

โ€œFind 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€” ๐Ÿ‘ 2    ๐Ÿ” 2    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
โ€œIโ€™ve found over the years, that once Iโ€™m comfortable sharing my other identities, then Iโ€™m 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

โ€œIโ€™ve found over the years, that once Iโ€™m comfortable sharing my other identities, then Iโ€™m 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

โ€œIโ€™ve found over the years, that once Iโ€™m comfortable sharing my other identities, then Iโ€™m 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€” ๐Ÿ‘ 1    ๐Ÿ” 1    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
โ€œYou have to figure out where your boundaries are, and then advocate for yourself.โ€ - Edith Mukantwari #PxP25

โ€œYou have to figure out where your boundaries are, and then advocate for yourself.โ€ - Edith Mukantwari #PxP25

โ€œYou have to figure out where your boundaries are, and then advocate for yourself.โ€ - Edith Mukantwari #PxP25

11.09.2025 01:20 โ€” ๐Ÿ‘ 1    ๐Ÿ” 1    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
โ€œWe presume that patients need training, and I think we should not assume that researchers know how to engage patients.โ€ - Kwanele Asante #PxP25

โ€œWe presume that patients need training, and I think we should not assume that researchers know how to engage patients.โ€ - Kwanele Asante #PxP25

โ€œWe 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€” ๐Ÿ‘ 1    ๐Ÿ” 1    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
โ€œItโ€™s important to make sure you ask the patient partners youโ€™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.โ€ - Maureen Bult-Mulder #PxP25

โ€œItโ€™s important to make sure you ask the patient partners youโ€™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.โ€ - Maureen Bult-Mulder #PxP25

โ€œItโ€™s important to make sure you ask the patient partners youโ€™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.โ€ - Maureen Bult-Mulder #PxP25

11.09.2025 01:20 โ€” ๐Ÿ‘ 1    ๐Ÿ” 1    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
โ€œBeing a patient is a job - itโ€™s like a full time job.โ€ โ€œItโ€™s possible to be an insider and an outsider [if youโ€™re a patient and a researcher].โ€ - Zahra Sherwani #PxP25

โ€œBeing a patient is a job - itโ€™s like a full time job.โ€ โ€œItโ€™s possible to be an insider and an outsider [if youโ€™re a patient and a researcher].โ€ - Zahra Sherwani #PxP25

โ€œBeing a patient is a job - itโ€™s like a full time job.โ€ โ€œItโ€™s possible to be an insider and an outsider [if youโ€™re a patient and a researcher].โ€ - Zahra Sherwani #PxP25

11.09.2025 01:20 โ€” ๐Ÿ‘ 2    ๐Ÿ” 2    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
โ€œFor me itโ€™s been beneficial and not beneficial to share that Iโ€™m a patient. As a psychologist professionally, opening up about living with a chronic illness identity has given me patient partner opportunitiesโ€ฆThere is also bias. I donโ€™t look โ€˜sick enough,โ€™ โ€˜not disabled enough.โ€™โ€ - Maalvika Bhuvansunder

โ€œFor me itโ€™s been beneficial and not beneficial to share that Iโ€™m a patient. As a psychologist professionally, opening up about living with a chronic illness identity has given me patient partner opportunitiesโ€ฆThere is also bias. I donโ€™t look โ€˜sick enough,โ€™ โ€˜not disabled enough.โ€™โ€ - Maalvika Bhuvansunder

โ€œFor me itโ€™s been beneficial & not beneficial to share that Iโ€™m a patient. As a psychologist professionally, opening up about living with a chronic illness identity has given me patient partner opportunitiesโ€ฆThere is also bias. I donโ€™t look โ€˜sick enough'.โ€™โ€ - Maalvika Bhuvansunder

11.09.2025 01:20 โ€” ๐Ÿ‘ 1    ๐Ÿ” 1    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0

๐Ÿ’šIn 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€” ๐Ÿ‘ 1    ๐Ÿ” 1    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
Day 2: Setting up for success and inspiring others. Grid of photos of Day 2 speakers at PxP 2025.

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

๐Ÿ’œThank you so much to Kwanele Asante for guiding our second day of PxP 2025 as the conference host, and to the incredible speakers for todayโ€™s sessions. ๐Ÿ‘. Thank you for everything you shared โ€“ for your wisdom, honesty and practical examples for doing better research.

11.09.2025 01:20 โ€” ๐Ÿ‘ 5    ๐Ÿ” 2    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0

@pxphub is following 20 prominent accounts