“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

“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

“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

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.

PxP India 2025 - PxP We are grateful to the 2024 PxP Steering Committee for their guidance and expertise. All members of the Steering Committee identify as patient partners.

2/ Maalvika is also leading the first ever PxP India virtual session on August 30th 7:00 PM - 8:30 PM IST. More info and register: pxphub.org/event/pxp-in...

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

@dawnrichards.bsky.social @profkarimkhan.bsky.social @proulxlaurie.bsky.social

CASS Virtual Canadian Arthritis Summer School. Calling patient partners and trainees to submit an expression of interest.

A steering committee entirely made up of patient partners and trainees has co-created the agenda for the Canadian Arthritis Summer School.

Taking place virtually from June 3-5.

Patient partners and trainees can learn more and apply here by April 28: bit.ly/CanadianArth...

Faculty Job: Delighted to share this call for Indigenous Applicants in Health, Sport, and/or Well-being
bit.ly/4c8sbqh @hettymulhall.bsky.social

With thanks to Kelly Ho, Shatha Atieth, Linda Niksic and Angela Woollam for leading the event, and to Erin Beattie and James Davis at @nmd4c.ca for supporting the session.

- Engaging and co-creating with patient partners from the start of a project makes research better throughout the research process. This includes working in a collaborative and bi-directional way on clear/plain language writing.

We discussed:
- Clear/plain language is about levelling the playing field and reducing power imbalances for all members of the research community.
- Everyone on the research team has a responsibility to communicate clearly and make intentional language choices.

This image is a graphic recording of a talk on plain language by Anna Samson and Hetty Mulhall. To the left of the image, some key take-aways are described and accompanied by a range of icons. For example, there is a drawing of a sports field along with the point that plain language is about levelling the playing field. There is also an image of weighing scales, along with the comment that plain language helps to reduce bower imbalances. To the right of the graphic recording is a list of specific tips for writing in clear language. These include: - Aim for grade 8 reading level - Read aloud what you have written - Use simple sentence structure - Get to the point and stick to essential information - Use alt text for images - Consider having more than one format for content such as written, video and audio - Check that font choice is easy to read and use colour contrast tools

Making the case for clear language. Anna Samson @disabilitywithanna.bsky.social and I co-presented at a virtual symposium on the importance of clear/plain language. Our key points are beautifully summarised in this graphic recording by visual alchemist Candace Ramjohn.

@alexhaagaard.bsky.social

Research Impact and Open science virtual half day. Photos of six panelists.

⏰Free, virtual session on March 20th for all members of the #HealthResearch team.

Learn about writing an effective narrative CV, how to apply #OpenScience principles, and frameworks to measure #ResearchImpact.

Panelist biographies: cihr-irsc.gc.ca/e/54201.html

✅Register: zoom.us/webinar/regi...

📢 Weekend reading on power dynamics in #PatientEngagement in #Research. Preprint (that means not peer reviewed yet) from our team that includes #PatientPartners and research allies and is about 4 themes concerning power on #PPI teams - osf.io/preprints/os... A bit of a 🧵 for you .../1

⭐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

*Everyone* involved in health research can learn something important from this awesome panel on Feb 5th. Speaker biographies are available here: pxphub.org/event/webina...

Stay tuned over the next couple days. Will be putting out some information on a webinar we’ll be putting on in late January called,
“Defining the Scope:
Developing Mindful Lived Experience Partnerships for Health Research Ecosystems in an Era of Misinformation” #PatientEngagement

New Blog By Oluwafemi Ajayi: A Clarion Call for Africa to Embrace Patient Inclusion and Patient Engagement in Healthcare Research

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

One of my ongoing projects with more to come in 2025!

Remuneration of African patient partners is an important tool for health justice Consistent and fair remuneration is essential to empower African patient partners to contribute to health decisions and policies that affect them, writes Kwanele Asante Global calls for patient part...

Compensating patient partners on #PatientEngagement teams is about equity. @kwaneleasante.bsky.social wrote this powerful piece about renumeration of African patient partners being about health justice www.bmj.com/content/387/.... Pls take a few mins to learn from this global patient leader

Thanks Dawn! Excited to see how things evolve on this platform!