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.
“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
September 11, 2025 at 1:24 AM
“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
“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](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:diqfaykivhvyyba66w5ybch5/bafkreie744sogbp6q3akkaihdpcih7o5fzbt52xbsn65q4kxeelbhkfxcy@jpeg)
September 11, 2025 at 1:24 AM
“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
“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
September 11, 2025 at 1:24 AM
“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
“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
September 11, 2025 at 1:24 AM
“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
“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
September 11, 2025 at 1:24 AM
“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
“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
September 11, 2025 at 1:24 AM
“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
“We presume that patients need training, and I think we should not assume that researchers know how to engage patients.” - Kwanele Asante #PxP25
September 11, 2025 at 1:24 AM
“We presume that patients need training, and I think we should not assume that researchers know how to engage patients.” - Kwanele Asante #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
September 11, 2025 at 1:24 AM
“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
“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](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:diqfaykivhvyyba66w5ybch5/bafkreigophoki5hkol3jrljyomnkdiyg5jhzej6wdccdpjqt4k2i22rupi@jpeg)
September 11, 2025 at 1:24 AM
“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
“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
September 11, 2025 at 1:24 AM
“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
💜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.
September 11, 2025 at 1:24 AM
💜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.
“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
September 9, 2025 at 10:08 PM
“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
“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
September 9, 2025 at 10:08 PM
“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
“Expertise makes the distinction between our experience and our expertise like others on the team (e.g. a biostatistician).” - Greg Merritt
September 9, 2025 at 10:08 PM
“Expertise makes the distinction between our experience and our expertise like others on the team (e.g. a biostatistician).” - Greg Merritt
“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
September 9, 2025 at 10:08 PM
“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
“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
September 9, 2025 at 10:08 PM
“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
“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
September 9, 2025 at 10:08 PM
“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
“One voice is not enough. We need many patient voices- loud, clear, and informed, at every decision-making table.” - Josef de Guzman #PxP25
September 9, 2025 at 10:08 PM
“One voice is not enough. We need many patient voices- loud, clear, and informed, at every decision-making table.” - Josef de Guzman #PxP25
“Patience, grace, and understanding that changing culture takes time. Patient engagement is fairly new and people are learning together.” - Cheslie Johnston
September 9, 2025 at 10:08 PM
“Patience, grace, and understanding that changing culture takes time. Patient engagement is fairly new and people are learning together.” - Cheslie Johnston
“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
September 9, 2025 at 10:08 PM
“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
“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
September 9, 2025 at 10:08 PM
“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
