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

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....

💜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.

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 🥳

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!

What did you learn at #PxP25 today? Did particular words resonate with you? We would love to hear your reflections in the comments below ⬇️

PxP Steering Committee Member Simon Stones shares a quote on the importance of patient partner leadership and why they should be at the forefront of initiatives like PxP. Learn more about PxP 2025 here: pxphub.org/event/ #PxP25 #PatientEngagement

PxP Steering Committee Member Patrícia de Luca shares a quote highlighting the value of diverse, global perspectives, especially from individuals living with chronic conditions. Learn more about PxP 2025 here: pxphub.org/event/ #PxP25 #PatientEngagement

PxP Steering Committee Member Maalvika Bhuvansunder shares a video on why PxP 2025 is meaningful to her and why you should join as well. Learn more about PxP 2025 here: pxphub.org/event/ #PxP25 #PatientEngagement #ForPatientsByPatients #PPI #PatientPartnership #HealthResearch

#PxP25 starts tomorrow! A huge thank you to our incredible 2025 steering committee for their guidance at every step of the way. 💜💚💜 We are excited to learn from this amazing line-up of speakers! ✅Still time to register: bit.ly/PxP-2025

PxP India is taking place on August 30th 7 pm IST. The session is geared towards those based in India, but open to people from across the globe with an interest in patient engagement (PPI) in health research. 👉More info and register: pxphub.org/event/pxp-in...

🤩We are so grateful to these incredible people who will be speaking during the virtual conference in September (9th-12th). Check out their speaker biographies here: pxphub.org/event/speake... #PxP25 #PatientEngagement #PPI #ConsumerInvolvement

🎥Recording is now available to watch PxP Africa if you missed joining us live, or want to watch the session back to reflect on all the valuable insights from our speakers: youtu.be/ol0bavw8psA #PxP25 #PatientEngagement #PPI

PxP Steering Committee Member Maalvika Bhuvansunder shares a video on why PxP 2025 is meaningful to her and why you should join as well. Learn more about PxP 2025 here: pxphub.org/event/ #PxP25 #PatientEngagement #ForPatientsByPatients #PPI #PatientPartnership #HealthResearch

📢We are very excited to announce that the speakers for PxP Africa will be Action Amos, Mbali Ngobese, and Rosebud Ombura. We are looking forward to connecting with everybody on August 13th! There is still time to register here: pxphub.org/event/pxp-af... #PxP25 #PxPAfrica

PxP Steering Committee Member Patrícia de Luca shares a quote highlighting the value of diverse, global perspectives, especially from individuals living with chronic conditions. Learn more about PxP 2025 here: pxphub.org/event/ #PxP25 #PatientEngagement

EVENT 🌟 Registration is open for PxP25! Sept 9–12 | Free, fully virtual conference for patient partners, researchers & clinicians to connect & learn. ✔️ Live sessions ✔️ Watch parties for all time zones ✔️ Recordings after event Register 👉 events.zoom.us/ev/Asr1pT76o...

ÉVÉNEMENT 🌟 Les inscriptions sont ouvertes pour PxP25 ! Du 9 au 12 sept | Conférence gratuite et virtuelle pour patient·e·s, chercheur·euse·s & clinicien·ne·s. ✔️ Séances en direct ✔️ Rediffusions selon fuseaux horaires ✔️ Enregistrements disponibles Inscription 👉 events.zoom.us/ev/Asr1pT76o...

📢Introducing PxP Australia! - a regional PxP webinar, led by Janelle Bowden and Letisha Living (2025 PXP Steering Cttee members). Learn about “working well together" with Janelle, Letisha and Dr. Joan Carlini - pxphub.org/event/pxp-au... #ForPatientsByPatients #PxP25 #PPI #ConsumerInvolvement

Calling Patient Partners who do their own research! With all the information online, it can be difficult to know what is trustworthy or credible content. So, we created the resource "Fact vs. Fiction: Helping you sift through online information." 👉 bit.ly/4lTe781

Need to write a Letter of Support but don’t know where to get started? We’ve created this resource for you if you’re a patient partner and you’ve been asked to write a Letter of Support for a researcher or research team. Link: pxphub.org/a-resource-f...

PxP Steering Committee Member Simon Stones shares a quote on the importance of patient partner leadership and why they should be at the forefront of initiatives like PxP. Learn more about PxP 2025 here: pxphub.org/event/ #PxP25 #PatientEngagement

@pxphub.bsky.social is hosting a FREE virtual conference this September - your chance to connect, learn, and share resources with an amazing community dedicated to patient engagement. 🤝 🔗 Register here: events.zoom.us/ev/Asr1pT76o...

How can we ensure that virtual conferences like #PxP25 are rooted in accessibility? Some ideas here: pxphub.org/accessibilit... #PPI #PatientEngagement #ConsumerInvolvement @coffeeandresearch.bsky.social @dawnrichards.bsky.social

📢Sign up now for #PxP25! September 9-12, depending where you are based in the world. Our conference is virtual and free to attend. bit.ly/3HwYxQg #PPI #ConsumerInvolvement #ForPatientsByPatients

📢 Hope you’ll join this conference about #PatientEngagement in research. It’s open to everyone and completely designed by patient partners👇

📢 Save the date! PxP (For Patients, By Patients) is coming back September 9-12, 2025! 🎉 A free, virtual event focused on #PatientEngagement — created by patients, for patients. 💌Stay in the loop: sign up for the PxP newsletter (link in bio). #PxP25 #ForPatientsByPatients

Thrilled to join fellow patient partners in this upcoming #webinar on growing your influence in patient engagement! 📆 May 12, 2026 ⏰ 12 PM PDT Let’s keep pushing the boundaries of #PatientPartnership The work is far from finished Sign up lnkd.in/eiRyWdFR #PatientVoice #PXP @pxphub.bsky.social

@pxphub.bsky.social - a virtual conference by and for patients all about #PatientEngagement in research has a LinkTree! bit.ly/m/PxPHub. Everything in one easy spot about PxP webinars, the annual conference and its recordings, and resources. Enjoy!

Curious about why it is important to provide input on a research team’s draft manuscript, and how to do it? Read PXP’s new blog and checklist for patient partners/people with lived experience: bit.ly/43p0vLt.

Patient partner research has a compensation crisis. Lived experience is central to meaningful research, but participants face a labyrinth of institutional barriers to fair payment -- if it's offered at all, by @amyprice.bsky.social @dawnrichards.bsky.social www.bmj.com/content/388/... via @bmj.com

A new PXP (for patients, by patients) webinar is now available on Youtube: bit.ly/4hek4ZY! Patient partners Francine Buchanan, Linda Niksic , Jim Mann and Alex Haagaard share perspectives on Barriers and Facilitators to Patient Engagement in Research.

🤩Happening today! Still time to register (for free). We are looking forward to connecting with lots of you virtually. Not able to attend live? Please send any questions for our panelists to [email protected] and we can ask those (anonymously) on your behalf. Recording will be available after.

📣 Need a good distraction for 1.5 hours this week? Join this amazing group of people tomorrow to learn more about their experiences in #PatientEngagement in research? if you can't join us live, it will be recorded. 👇 @alexhaagaard.bsky.social @francinebu.bsky.social

⭐Webinar reminder! Join us tomorrow, February 5th. Find out how our panelists have navigated working as part of a research team, including what supports and facilitators they have asked for or created for themselves. #PatientEngagement #PatientPartners #PPI #PxP25

I was invited by @pxphub.bsky.social to write about how to make partnering in research work for me with a #chronicillness #PatientEngagement pxphub.org/attending-in...

This is happening in a few weeks!!

Sign up for our webinar on Patient Partner Perspectives on Barriers & Facilitators to Patient Engagement in Research. 📅Date: February 5, 2025 ⏰ Time: 2:30 PM PT / 5:30 PM ET / 10:30 PM UTC 🔗https://zoom.us/webinar/register/WN_v7Cp_QzFTWSzFUajeUQBYg#/registration #PatientEngagement #PxP

As we reflect on 2024, we are deeply grateful to everyone who helped make the PxP conference, webinars, and blog such a success. We can’t wait for #PxP25 and the chance to connect with even more amazing people from the patient partner community across the globe. #PxP #PatientEngagement

New Blog by Oluwafemi Ajayi available on the PxP Resource Hub. Oluwafemi discusses the importance of patient engagement in African health research, sharing her personal experience with sickle cell disease. 🔗 pxphub.org/a-clarion-ca... #PxP #PatientEngagement #HealthResearch

🔔 Final reminder! The survey closes soon ⏳ We still need input from POR trainees to improve our capacity-building programs 📚 Thank you to everyone who’s participated! 👉 Take the survey now: https://buff.ly/49vzKG2

We need much better #ResearchDesign in the #ChronicPain space. Especially as it relates to #chronic #pain, driven by #ChronicIllness. Because current research is so disrespectful (“false” signals, pain “sensitization”, etc) and gaslighting to patients who are suffering deeply. 1/

Re-upping this eloquent and important article by @kwaneleasante.bsky.social #PatientEngagement 👇

Recommended Read: Kwanele Asante's article highlights why fair remuneration for African patient partners is essential for advancing health justice and equity. Read the full piece here: www.bmj.com/content/387/... #PxP #HealthEquity #PatientAdvocacy #GlobalHealth #HealthJustice

📣 For those new or not quite sure about patient engagement in research, this free, online How-To Guide to PE in research was developed by patient partners for anyone on a research team (supported by the CIHR Institute of Musculoskeletal Health and Arthritis). cihr-irsc.gc.ca/e/27297.html... /1

I guess I should share this here too now. pxphub.org/what-social-...