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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 21/09/2026

Mark Your Calendars! Our next Community of Practice session will be on Oct 7th from 12-1 PM EST! A great opportunity to learn from the team about engaging family, specifically siblings in research! Join us on Zoom: us02web.zoom.us/j/8123452846...

PLEX Engagement in Research

Community of Practice

Samantha Bellefeuille, Hanae Davis, and Linda Nguyen will be presenting “Growing Together: Building and Sustaining a Partnership with Siblings Over Time”

Oct 7th, 2026

12:00 pm - 1:00 pm EST

Via Zoom Link (above)

See past recordings and summaries here: www.uhnpiper.ca

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 11/08/2026

📣 Opportunity to participate in research! 📣 The PRECISE Study at the Bloorview Research Institute is recruiting study participants. Complete this intake form to sign up for the study: redcap.link/PRECISE_Intake

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 15/07/2026

Mark Your Calendars! Our next Community of Practice session will be on July 29th from 12-1 PM EST! A great opportunity to learn from the team at Creative Destruction Lab who will share their learnings from engaging people with lived experience in early-stage cancer innovation!

PLEX Engagement in Research

Community of Practice

Robby Spring and Mathew Platt will be presenting "Creative Destruction Lab Cancer Patient Contribution Group: Shaping Early-Stage Cancer Innovation with Lived Experience"

July 29th from 12-1 pm EST.

Zoom Link: https://us02web.zoom.us/j/81234528464?pwd=jec3KCcIUqJObRDPfZMBt60ik7VkCu.1

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 30/06/2026

Wondering what the PiPER Community of Practice is all about and when the next session is? Join us on July 29th from 12-1 pm EST to learn more about engaging people with lived experience in early stage cancer innovation! Zoom Link: lnkd.in/eHbU6zE9

People with lived experience (PLEX) and researchers co-present their lessons learned and opportunities to improve on the research process.

This live webinar delivered over Zoom enables attendees to learn about the engagement of PLEX as partners in research and connect with others with similar interests!

Last Wednesday of every month from 12-1 pm EST. See past recordings and summaries here: www.uhnpiper.ca

Robby Spring and Mathew Platt will be presenting
“CDL Cancer Patient Contribution Group: Shaping Early-Stage Cancer Innovation with Lived Experience” on July 29th from 12-1 pm. Zoom Link: https://us02web.zoom.us/j/81234528464?pwd=jec3KCcIUqJObRDPfZMBt60ik7VkCu.1

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Reposted by Pride in Patient Engagement in Research

Gabriela Melo Ghisi @gabrielamghisi.bsky.social · 10/06/2026

Excited to see several of my projects featured in the UHN Research Explained database! This provides searchable plain language summaries that make research more accessible to patients, families, and the public. A great initiative supported by @piper-uhn.bsky.social : uhnresearchexplained.ca

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 10/06/2026

Our colleagues at the Family Engagement in Research Program are accepting applicants for the September 2026 and January 2027 cohorts! ✨ Learn more: canva.link/fer2026-2027 🔗 Apply: redcap.link/FER26-27

Our colleagues at the Family Engagement in Research Program are accepting applicants for the September 2026 and January 2027 cohorts!

The FER Course brings together researchers, clinicians, and people with lived experience to strengthen meaningful partnerships in research through practical, applied learning.

✨ Learn more: https://canva.link/fer2026-2027
🔗 Apply: https://redcap.link/FER26-27

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 02/06/2026

‼️Funding Announcement for UHN Research Teams ‼️ PiPER is inviting UHN research teams to apply for the 2026 PiPER Grants. Call for Proposals (internal connection required): universityhealthnetwork.sharepoint.com/teams/uhnpip...

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 22/05/2026

Research organizations and granting agencies worldwide require public disclosure of clinical trial results. UHN Research Explained is UHN’s public facing website of plain language summaries and is a great tool for sharing research results publicly, in accessible ways: www.uhnresearchexplained.ca

uhnresearchexplained.ca

UHN Research Explained

UHN Research Explained, and that it is a database of summaries that are easily searchable.

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 21/05/2026

PLEX engagement doesn’t start at recruitment, and it doesn’t end at results. Below is an example of how PLEX can be engaged as a research team member across the clinical trial lifecycle. Additional timelines (internal connection req): universityhealthnetwork.sharepoint.com/teams/uhnpip...

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 20/05/2026

Paying and recognizing PLEX fairly isn’t optional- it’s foundational. When partnering with PLEX in clinical research, it’s essential to plan early and thoughtfully for compensation. Check out the following publications: link.springer.com/article/10.1... pmc.ncbi.nlm.nih.gov/articles/PMC...

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 20/05/2026

Clinical Research Week is taking place from May 19–22, 2026! Throughout the week, PiPER will be sharing resources and tools that promote the engagement of PLEX as partners in clinical research. Check out the PiPER Toolkit here: www.kite-uhn.com/piper/pipert...

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 11/05/2026

Mark Your Calendars! Our next session on May 27th from 12-1 pm will be featuring a dynamic presentation by a team from the EMBRACE Lab Calgary regarding developing a Patient Advisory Council! Zoom Link: lnkd.in/eHbU6zE9

PLEX Engagement in Research

Hannah Botkin, Halle Deakin, Robyn Vettese will be presenting "Partnering for Polycystic Ovary Syndrome (PCOS) Research: Insights from the PCOS Patient Advisory Council (PPAC)".

May 27th 2026, 12-1 pm EST

Via Zoom

Contact Us at piper@uhn.ca

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 04/05/2026

The PiPER team is excited to announce the members of the Person with Lived Experience (PLEX) Network Working Group! A Working Group will continue to meet throughout 2026 to continue the development of the PLEX Network. Become a PiPER Member to stay informed: forms.cloud.microsoft//Pages/Respo...

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 09/04/2026

The PiPER Team was pleased to attend and present at @kiteuhn.bsky.social's inaugural SOAR: Showcasing Outstanding Achievement in Research event! To learn more about PiPER, please check out our website: www.uhnpiper.ca and for UHN staff please visit our new SharePoint site: lnkd.in/e9e6N2Kq

PiPER manager standing beside the opening slide of the presentation "Paying People with Lived Experience to Work as Partners Builds Better Research" at the SOAR Event.

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 18/03/2026

Our next PiPER Community of Practice is one week away! Join us to learn more about involving people with lived experience in digital health evaluation! @uhnresearch.ca @wchospital.bsky.social

Onil Bhattacharyya and Sandra Holdsworth will be presenting "Patient Partners in Learning Health Systems: The Centre for Digital Health Evaluation Experience"

March 25th from 12-1 pm EST

Zoom Link: https://us02web.zoom.us/s/81234528464?pwd=jec3KCcIUqJObRDPfZMBt60ik7VkCu.1#success

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 11/03/2026

PiPER SharePoint is a resource for UHN Research to navigate and implement the engagement of people with lived experience (PLEX; includes patients, family members, and caregivers) as partners in research: universityhealthnetwork.sharepoint.com/teams/uhnpip... *UHN email address required to access

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 04/03/2026

We are excited to announce this month's PiPER Community of Practice! Save the date on *March 25th 2026* from 12-1 pm for a dynamic session entitled "Patient Partners in Learning Health Systems: The Centre for Digital Health Evaluation Experience". Join at this Zoom link: lnkd.in/eHbU6zE9

PLEX Engagement in Research
Community of Practice

Onil Bhattacharyya and Sandra Holdsworth will be presenting "Patient Partners in Learning Health Systems: The Centre for Digital Health Evaluation Experience".

March 25th from 12-1 pm

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 07/01/2026

Save the date on January 28th 2026 from 12-1 pm for a dynamic Community of Practice session titled “Lessons Learned by a Research Team New to Engaging PLEX in Randomized Controlled Trials! Zoom Link: lnkd.in/eHbU6zE9

PLEX Engagement in Research

Community of Practice

James Khan, Cathy Ammendolea, Therese Lane, Nour Ayach, and Sarah Miles will be speaking about "Lessons Learned by a Research Team New to Engaging PLEX in Randomized Controlled Trials.

PLEX are People with Lived Experience (Patients, Families, Carers(

Jan 28th 2026
12-1 pm EST
Zoom Link (above)
Contact Us at piper@uhn.ca

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 05/01/2026

The 3rd annual PiPER Research Day on October 8th, 2025, welcomed over 175 attendees to share work under the theme of "Do the Right Thing, Share it With Others, Build a Better Tomorrow". Check out our summary report from the event, showcasing event highlights and key takeaways: bit.ly/4aGsCJJ

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 10/12/2025

Have you had a chance to check out last month's newsletter? kite-uhn-piper.s3.ca-central-1.amazonaws.com/docs/Novembe... Become a PiPER Member to learn more about upcoming updates, opportunities, and events: www.surveymonkey.com/r/MTZJYTF

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 08/12/2025

Ready to share outputs co-created with people with lived experience on a research project? Check Out Our Full Report: lnkd.in/e_vcyK-n Share the report considerations that resonate with you—and add your own ideas for the doing phase of research! @wchospital.bsky.social @uhnresearch.ca

Engaging people with lived experience can occur at the end of a research project during the sharing phase. Here are some key considerations identified by our symposium participants:

Value contributions (e.g., co-authorship and team celebrations)

Ask for feedback on project outputs

Use creative ways to share project outputs
(e.g., graphic novel, photo collage)

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 03/12/2025

Registration is open for the first OSSU World Café Conversation! We will explore what “meaningful engagement” means, who defines it, and how to move beyond tokenism toward real co-production. Dec 10 at 12 p.m. EST. Register: us06web.zoom.us/meeting/regi... #HealthResearch #PatientEngagement

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 01/12/2025

Collaborating with people with lived experience on a research project? Check Out Our Full Report: www.womensacademics.ca/wp-content/u... Share the report considerations that resonate with you—and add your own ideas for the doing phase of research! @wchospital.bsky.social @uhnresearch.ca

Engaging people with lived experience can occur during the doing phase of a research project. Here are some key considerations identified by our symposium participants:

Make a concerted effort to meaningfully engage those often not engaged

Provide several ways to engage (e.g., in-person, virtual, emails)

Leverage the knowledge and skills that have people with lived experience have beyond their lived experience

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 25/11/2025

The PiPER team is thrilled to announce the 2025 PiPER Grant awardees (Community, Partnership, and Innovation streams). The full list of awardees can be found on the “Our Resources” tab on the PiPER website. kite-uhn.com/piper

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Reposted by Pride in Patient Engagement in Research

Pride in Patient Engagement in Research @piper-uhn.bsky.social · 10/11/2025

Our next Community of Practice session is on Nov 26th from 12-1 pm! Arani Hiritharan, Corinne Rose, and Justin Hayes-Lemke will be speaking about “Collaboration not Consultation: Learning from the Digital Action Youth Advisory at Youth Wellness Hubs Ontario” Zoom Link: lnkd.in/eiuE82FR

PLEX Engagement in Research
Nov 26th from 12:00 - 1:00 pm EST

Arani Hiritharan, Corinne Rose, and Justin Hayes-Lemke will be speaking about “Collaboration not Consultation: Learning from the Digital Action Youth Advisory at Youth Wellness Hubs Ontario”

Zoom Link: https://lnkd.in/eiuE82FR

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 24/11/2025

Preparing to involve people with lived experience in your research? Check Out Our Full Report: lnkd.in/e_vcyK-n Share the report considerations that resonate with you—and add your own ideas for the planning phase of research! @wchospital.bsky.social @uhnresearch.ca

Engaging people with lived experience can begin as early as the planning phase of a research project.

Here are some key considerations identified by our symposium participants:

Recognize and address power imbalances at the start of a project

Use and share existing engagement resources and toolkits

Build in time for personal introductions and connecting at meetings

Full summary report link: https://www.womensacademics.ca/wp-content/uploads/2025/10/Final-WCH-x-PiPER-Report_09_17_2025.pdf

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Reposted by Pride in Patient Engagement in Research

Research at UHN @uhnresearch.ca · 20/11/2025

@uhn.ca's Patient Engagement in Research (@piper-uhn.bsky.social) team recently hosted its 3rd annual Research Day. Over 200 attendees explored how partnering with people with lived experience (PLEX) makes research more relevant & impactful. Read more: www.uhnresearch.ca/news/piper-r...

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 10/11/2025

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 03/11/2025

On May 8th 2025, Women's College Hospital and Pride in Patient Engagement in Research (PiPER) at UHN co-hosted a hybrid event called Redefining Patient Engagement: Shaping Research Together Symposium. Check out the report and share your thoughts! Report Link: tinyurl.com/mu27d4d3

Redefining Patient Engagement: Shaping Research Together Symposium - May 8 2025

Report Link: https://www.womensacademics.ca/wp-content/uploads/2025/10/Final-WCH-x-PiPER-Report_09_17_2025.pdf

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 31/10/2025

We're always looking for ways to improve and expand our PiPER Community of Practice! Your feedback is invaluable in helping us create a space that supports learning, collaboration, and innovation in involving people with lived experience in research. Survey Link: www.surveymonkey.com/r/8GXCQZP

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 08/10/2025

Our Keynote Panel - moderated by Angela M. Cheung with panelists Alexandra Rendely, Rebecca Lewkowicz, and Susie Goulding explored "The Important Role of People with Lived Experience in Long-COVID Care and Research". #PiPERResearchDay2025

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 08/10/2025

Check out the live illustration from ThinkLink Graphics — capturing the key insights and moments from today’s event in real time. Stay tuned for more visual highlights! #PiPERResearchDay2025

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 08/10/2025

We’re honoured to welcome our Keynote Speaker, Dr. Mahadeo Sukhai — a trailblazer in advancing accessibility and inclusion across the sciences and healthcare. Dr. Sukhai’s is presenting on “Anti-Ableism in Patient Engagement and Research: A Personal and Professional Journey". #PiPERResearchDay2025

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 08/10/2025

🚀 Today is PiPER Research Day 2025! Have you had a chance to explore the program yet? Follow along for highlights, key takeaways, and moments from our presenters throughout the day. drive.google.com/file/d/1vPaU... Don’t forget to tag us and share your experience using #PiPERResearchDay2025!

drive.google.com

PiPER Research Day 2025 Program Booklet.pdf

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 06/10/2025

🚨 Only 2 DAYS to go! 🚨 PiPER Research Day 2025 is almost here—happening this October 8th at the beautiful Guild Inn Estate. 🗺️ Make sure you're ready! Check out the venue details and directions. Learn more here: site.pheedloop.com/event/PiPER2...

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 02/10/2025

PiPER Research Day 2025 is just around the corner! We're excited to share the venue map to help you plan your day. There will be quiet spaces and accessible washrooms. Fuel your day with continental breakfast, buffet lunch and burgers and bar during networking hour. Can't wait to see you there!

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 29/09/2025

Check out the PiPER Research Day 2025 program below! ✅ Build meaningful relationships and exchange insights ✅ Share success stories and lived experiences ✅ Promote best practices in PLEX engagement in research 🕰️ Registration Closes Sep 30th! 🎟️Register here to join us: lnkd.in/eQeu4u-u

**PiPER | Pride in Patient Engagement in Research**
**RESEARCH DAY PROGRAM**
**OCTOBER 8, 2025**
*PLEX = People with lived experience*

**9:00 - 9:30 AM** | Registration | Breakfast & Networking
**9:30 - 10:00 AM** | Welcome & Opening Remarks
**10:00 - 11:00 AM** | Keynote: Accessibility & PLEX Engagement
**11:00 - 11:30 AM** | Morning Break | Posters & Art Exhibit Viewing
**11:30 AM - 12:15 PM** | PLEX Storysharing - Oral Presentations: PLEX Engagement in Research Showcase | Oral Presentations: Do the Right Thing
**12:15 - 1:45 PM** | Lunch & Networking | Posters & Art Exhibit Viewing
**1:45 - 2:45 PM** | Panel: The Important Role of PLEX in Long-COVID Care and Research
**2:45 - 3:15 PM** | Panel: When Challenges Become Opportunities: Insights from Researchers
**3:15 - 3:45 PM** | Afternoon Break | Posters & Art Exhibit Viewing
**3:45 - 4:45 PM** | Interactive Panels: Build a Better Tomorrow Oral Presentations: Build a Better Tomorrow Workshop: The Future of PLEX Engagement
**4:45 - 5:00 PM** | Closing Remarks
**5:00 - 6:00 PM** | Networking Event: To be confirmed

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 24/09/2025

Join us today at 12:00 pm EST to learn more about how we can best support caregivers! Zoom Link: lnkd.in/eiuE82FR

Did You Know?

Over 7.8 Million Canadians over the age of 15 provide informal care (i.e., unpaid) to family members of friends with a:

Chronic condition
Physical or mental disability
Complications related to aging

39% of Ontarians are facing financial hardship caused by caregiving duties.

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 23/09/2025

The PiPER Research Day 2025 program is now live! Join us for a chance to build relationships, share success stories and exchange the latest information while promoting and strengthening the current practices of PLEX engagement in research. Register here: site.pheedloop.com/event/PiPER2...

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 22/09/2025

📢 Join us this WEDNESDAY on September 24th from 12:00 - 1:00 pm EST to learn from Judy Gargaro and Jackie Quemby about “How to Make Caregiving ‘E.A.S.I.E.R’? Advocating for Better Caregiver Support After Brain Injury” Zoom link: us02web.zoom.us/j/8491067757...

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 17/09/2025

📢 Join us on September 24th from 12:00 - 1:00 pm EST to learn from Judy Gargaro and Jackie Quemby about “How to Make Caregiving ‘E.A.S.I.E.R’? Advocating for Better Caregiver Support After Brain Injury” Zoom link: lnkd.in/eiuE82FR

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 12/09/2025

📢 Join us on September 24th from 12:00 - 1:00 pm EST to learn from Judy Gargaro and the team’s PLEX partner about “How to Make Caregiving ‘E.A.S.I.E.R’? Advocating for Better Caregiver Support After Brain Injury” Zoom link: us02web.zoom.us/postattendee...

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 10/09/2025

LATE-BREAKING POSTER SUBMISSIONS are open until Sept 17, 11:59 pm EST. Share your experiences and expertise engaging people with lived experience as partners in #research by submitting a poster here: site.pheedloop.com/portal/event.... Attendance is eligible to SOCRA/ACRP credits.

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 22/08/2025

Attending PiPER Research Day on October 8th 2025 is a great way to earn #SOCRA and/or #ACRP continuing education credits! To learn more and register visit our PiPER Research Day website: lnkd.in/enckBeGk #ClinicalTrials #ClinicalResearch #ClinicalResearchProfessionals

Did You Know?

Attending PiPER Research Day is a great way to earn SOCRA and ACRP continuing education credits.

Check out our website for more details and to register!

In-Person Attendance
$150 per person (+fees and HST)
*Registrations are non-refundable

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 21/08/2025

Missed one of our Community of Practice sessions? We've got you covered! Visit our website (www.uhnpiper.ca) under the Community of Practice tab to watch past recordings and read co-created summaries. 🗓️ Mark your calendar for our next session on September 24th from 12-1 pm EST via Zoom.

PLEX Engagement in Research - Community of Practice

Missed on of our CoP sessions? Check out the PiPER Website to watch the recordings and read co-created one-page summaries!

PLEX are People with Lived Experience (Patients, Families, Carers)

Our next CoP sessions will be: September 24th, October 29th, and November 26th from 12-1 pm on Zoom.

www.uhnpiper.ca

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 19/08/2025

The University Health Network's Pride in Pride in Patient Engagement in Research (PiPER) team is excited to host its Third Annual PiPER Research Day on October 8, 2025 at the beautiful Guild Inn Estate in Scarborough! See below for more details about the event venue. Register NOW: lnkd.in/eJC9Nvg6

Event Venue - Guild Inn Estate

To get to the venue:

The Guildwood Go Train station is a 5-minute drive (25-minute walk) from the venue.

The #116 Morningside bus stops directly on Guildwood Parkway outside of the venue (Stop is called Guild Park and Gardens East Side).

Accessible parking is available and all parking at the venue is free.

Wheeltrans will drop you off and pick you up at the accessible entrance at the venue.

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 18/08/2025

🔦Looking for an opportunity to elevate your brand and connect with patients, researchers, and healthcare leaders? PiPER is inviting your organization to be a sponsor for PiPER Research Day 2025! Interested in being a sponsor? Reach out to piper@uhn.ca by September 12th. @uhnresearch.ca

Become a Sponsor!

Sponsor a Person with Lived Experience ($200)

Platinum Sponsor (>$6,000)

Gold Sponsors ($4,500 - $6,000)

Silver Sponsors ($2,500-$4,000)

Bronze Sponsors ($2,500)

QR Code for Full Prospectus

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 11/08/2025

📣2025 PiPER Grants: Partnership Stream - Friday August, 15th @ 11:59 PM EST. Submit your application for an opportunity to receive one of at least 15 awards of $1,500 to advance the engagement of people with lived experience (PLEX) in research! Submit your application to piper@uhn.ca

📣 REMINDER: PROPOSAL DEADLINE

The deadline for proposals for the 2025 PiPER Grants: Partnership Stream is this *Friday, August 15th at 11:59 pm EST*.

Submit your application for an opportunity to receive one of at least 15 awards of $1,500 to advance the engagement of people with lived experience (PLEX) in research. These awards will be given to UHN research teams and PLEX who will use the funds to develop partnerships and support the early stages of PLEX engagement.

More information can be found in the Call for Proposals located under the "Our Resources" tab at www.uhnpiper.ca

All questions and submissions can be directed to piper@uhn.ca

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Pride in Patient Engagement in Research @piper-uhn.bsky.social · 07/08/2025

Looking for an opportunity to elevate your brand and connect with patients, researchers, and healthcare leaders? PiPER is inviting your organization to be a sponsor for PiPER Research Day 2025! Interested in being a sponsor? Reach out to piper@uhn.ca by September 12th.

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