In this episode, we’re joined by 4 team members of the APERSU Patient Engagement Network. They're here today to share their views and experiences about Patient Reported Outcome Measures, or PROMS for short.

Guests:

Gloria Wilkinson who is a retired registered nurse with over 25 years of experience volunteering in Alberta’s health system. She continues to stay actively engaged through ongoing learning, including training with Patient and Community Engagement Research. Living in a retirement community, Gloria brings a unique perspective shaped by daily connection with people of diverse abilities, keeping her closely attuned to the evolving needs of patients and caregivers.

D’Arcy Duquette, who is a dedicated patient advocate and cancer survivor who brings lived experience and leadership to improving health systems across Alberta. He serves on numerous advisory committees and networks, contributing to initiatives in patient engagement, emergency care, and quality improvement. D’Arcy’s work has been recognized with the Queen Elizabeth II Platinum Jubilee Medal for his contributions to community and healthcare advocacy.

Simron Sidhu, who is a passionate advocate for inclusive, people-centred health care shaped by personal experiences as a caregiver supporting chronic health issues. He has expertise in community engagement and collaborative problem solving, which helps ensure local perspectives guide health programs and decision-making.

Simron has served on the Imagine Citizens Network, championing culturally responsive mental health supports, advocating for immigrant health equity and incorporating these perspectives into policy solutions.

Allison Soprovich, who brings a nursing background and a deep commitment to patient-centred care. As an End-Users Lead for APERSU, she works across sectors and communities to bridge research and practice, with a passion for ensuring patient perspectives and the data they share, translate into meaningful improvements in health care.

Together, they’ve been co-designing tools like a patient-friendly PROMs tip sheet and contributing to presentations, panels, and research planning efforts. Their work highlights how partnership and co-creation can make PROMs more relevant, accessible, and impactful.

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Episode Introduction
In this episode, Part 2 of 2, we explore how deliberate and flexible strategies can create an ecology of inclusiveness, support, mutual respect, and co-building for meaningful patient engagement in health research. Patient Research Partners are integral members of the team, informing project design, participant recruitment strategies, data collection and analysis, and knowledge translation activities. Patient Research Partners are also involved in the implementation and dissemination of research results. Join us as we discuss the importance of patient engagement and involvement in the Re-Purposing the Ordering of Routine laboratory Tests (RePORT) study where people with lived experiences work together with academic researchers as active and equal team members.

Bios
Kim Giroux, is actively engaged as a patient research partner on several teams. She is especially interested in helping to reduce waste in healthcare, empowering patients to take an active role in their own care, knowledge translation and mobilization, equity in healthcare, and fostering interprovincial collaboration aimed at enhancing the efficiency of healthcare systems. Currently, she is a co-chair for the RePORT Patient Advisory Council.

Anni Rycthera, is a Health Sciences College Educator and former Nurse Practitioner with a background in Holistic Health. As an immigrant and mother of two, her personal health challenges include respiratory illness, nerve pain from sports injury, and as a cancer survivor. These experiences have shaped her advocacy for informed patient care and equal health partnerships. She has volunteered extensively with UVIC’s self-management programs and the Leukemia and Lymphoma Society. Over a decade ago, she started collaborating with CIHR SPOR and the BC SUPPORT Unit on patient-oriented research activities. Currently, she co-chairs the SPOR Patient Engagement National Community of Practice (SPENCoP) and is a Co-Chair for the RePORT Patient Advisory Council.

Nancy Verdin, has lived with kidney failure for 36 years and was one of the first in Alberta to do home, nocturnal hemodialysis. Her extensive experience includes ER visits, surgeries, and procedures. After her mother’s battle with dementia, she became a patient partner in 2017 with the Kidney Health Strategic Clinical Network, which sponsored her PaCER training. This training opened up new opportunities in partnering in patient-research. Nancy is a retired occupational therapist with 33 years of experience, including 30 years as a hand specialist. Her career has balanced clinical practice with patient experience, and she has contributed to numerous research projects, co-authored papers, and enjoyed co-presenting with fellow researchers.

Publications
Re-Purposing the Ordering of Routine Laboratory Tests in Hospitalized Medical Patients (RePORT): protocol for a multicenter stepped-wedge cluster randomised trial to evaluate the impact of a multicomponent intervention bundle to reduce laboratory test over-utilization (July 2024)

Operationalizing the principles of patient engagement through a Patient Advisory Council: Lessons and recommendations (November 2023)

Patient perceptions of in‐hospital laboratory blood testing: A patient‐oriented&

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In episode 24 of PEP Talks, we talk about the Newfoundland and Labrador SPOR SUPPORT Unit and how it works to improve the lives of patients by empowering them to support research that is important to them as patient research partners. Their lived experiences and personal healthcare journeys bring important perspectives to the table that help identify research priorities. Today, we speak with Mike Warren: a patient and family partner for the NL SUPPORT Unit, and Holly Etchegary: the patient engagement academic lead for the NL SUPPORT Unit and a health services researcher at the Memorial University of Newfoundland. In this episode, we will be discussing how the NL SUPPORT Unit Patient Advisory Council (PAC) came about, how a PAC can work, the importance of patient engagement, successes, challenges, the lessons learned, advice, and the future of patient engagement in Canada.