iiinova — where your digital self keeps evolving

PxP (For Patients, By Patients) @pxphub.bsky.social · 17/03/2026

2/ Suggested questions as a starting point: 🟣How has patient engagement changed in your region over the last 3-12 months? 🟢Do you see any gaps that you hope PxP might meet? 🟣What are your aspirations for PxP?

PxP (For Patients, By Patients) @pxphub.bsky.social · 17/03/2026

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PxP (For Patients, By Patients) @pxphub.bsky.social · 02/12/2025

🚂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...

More than a paper: ways to share research

PxP (For Patients, By Patients) @pxphub.bsky.social · 02/12/2025

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🌎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...

At the cutting edge: innovations in patient engagement

PxP (For Patients, By Patients) @pxphub.bsky.social · 01/12/2025

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...

Stronger together: building capacity on research teams

PxP (For Patients, By Patients) @pxphub.bsky.social · 01/12/2025

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...

pxphub.org

PxP 2025 Artworks - PxP

PxP 2025 artworks created by visual alchemist Candace Ramjohn during the annual conference, including impactful quotes...

PxP (For Patients, By Patients) @pxphub.bsky.social · 18/11/2025

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...

Laying the groundwork: setting up for success in patient partnership

PxP (For Patients, By Patients) @pxphub.bsky.social · 03/11/2025

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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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Journeys of impact: pathways of patient partners

PxP (For Patients, By Patients) @pxphub.bsky.social · 29/10/2025

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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Global voices, local impact: Patient Engagement in research around the world

PxP (For Patients, By Patients) @pxphub.bsky.social · 22/10/2025

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...

PxP Australia 2025

Anntics #difficultwoman @anntics.bsky.social · 12/09/2025

Reposted by PxP (For Patients, By Patients)

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

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PxP (For Patients, By Patients) @pxphub.bsky.social · 12/09/2025

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 · 12/09/2025

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....

doi.org

‘There's just no flexibility’: How space and time impact mental health consumer research

Non-consumer researchers collaborating with consumer researchers can benefit from greater relevance of research and improved congruence between research processes and health policy. As with all resea...

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PxP (For Patients, By Patients) @pxphub.bsky.social · 11/09/2025

“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 · 11/09/2025

“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

PxP (For Patients, By Patients) @pxphub.bsky.social · 11/09/2025

“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

PxP (For Patients, By Patients) @pxphub.bsky.social · 11/09/2025

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

PxP (For Patients, By Patients) @pxphub.bsky.social · 11/09/2025

“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

PxP (For Patients, By Patients) @pxphub.bsky.social · 11/09/2025

“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 · 11/09/2025

“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 · 11/09/2025

“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

PxP (For Patients, By Patients) @pxphub.bsky.social · 11/09/2025

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

PxP (For Patients, By Patients) @pxphub.bsky.social · 11/09/2025

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

PxP (For Patients, By Patients) @pxphub.bsky.social · 11/09/2025

“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

PxP (For Patients, By Patients) @pxphub.bsky.social · 11/09/2025

“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 · 11/09/2025

“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

PxP (For Patients, By Patients) @pxphub.bsky.social · 11/09/2025

💚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 ⬇️

PxP (For Patients, By Patients) @pxphub.bsky.social · 11/09/2025

💜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.

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 · 10/09/2025

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 🥳

pxphub.org

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).

PxP (For Patients, By Patients) @pxphub.bsky.social · 10/09/2025

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!

PxP (For Patients, By Patients) @pxphub.bsky.social · 09/09/2025

“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

PxP (For Patients, By Patients) @pxphub.bsky.social · 09/09/2025

“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 · 09/09/2025

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

PxP (For Patients, By Patients) @pxphub.bsky.social · 09/09/2025

“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

PxP (For Patients, By Patients) @pxphub.bsky.social · 09/09/2025

“Even though we may all live with the same disease, doctors need to know that our experiences are all different. We’re not just numbers.” - Marquetta Frost #PxP25

PxP (For Patients, By Patients) @pxphub.bsky.social · 09/09/2025

“You have power, you have expertise, it’s valued by lots of people. If that situation isn’t right, you can walk away and you will be valued somewhere else.” - Simon Stones #PxP25

PxP (For Patients, By Patients) @pxphub.bsky.social · 09/09/2025

“One voice is not enough. We need many patient voices- loud, clear, and informed, at every decision-making table.” - Josef de Guzman #PxP25

PxP (For Patients, By Patients) @pxphub.bsky.social · 09/09/2025

“Patience, grace, and understanding that changing culture takes time. Patient engagement is fairly new and people are learning together.” - Cheslie Johnston

PxP (For Patients, By Patients) @pxphub.bsky.social · 09/09/2025

“A paper that sits locked on a shelf is like a locked medicine cabinet. The medicine is there, but it doesn’t reach the people who need it.” - Marie Ennis-O'Connor

PxP (For Patients, By Patients) @pxphub.bsky.social · 09/09/2025

“The problem is that doctors think they know what patients want”- “how do patients assert their authority and voice, and make doctors and researchers understand more about this?” - Nikhil Jayswal #PxP25

PxP (For Patients, By Patients) @pxphub.bsky.social · 09/09/2025

“Engagement moves at the speed of trust. If you have no trust, you’ll never have engagement.” - Jeff Ordway #PxP25

PxP (For Patients, By Patients) @pxphub.bsky.social · 09/09/2025

“Trust is important. When you build that trust, you get to the point of being a partner.” - Joab Wako #PxP25