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.

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In episode 1 of the PaCER series, we speak to Dr. Maria Santana and Ingrid Nielssen about the Patient and Community Engagement Research (PaCER) program at the University of Calgary which teaches patient, family, and community members to bring patient-informed health research evidence into health care planning, practice, and policy. This innovative program teaches health research methodology, competencies, and skills to learners so they can more meaningfully collaborate on the research projects that matter to them and their communities. Join us in this episode to learn more about the PaCER program!

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Dr. Maria J. Santana, PhD, Principal Investigator and Advisory Group Member
Dr. Maria Santana is a health services researcher, and patient and family-centred care scientist. She is an Associate Professor in the departments of Pediatrics and Community Health Sciences at the Cumming School of Medicine, University of Calgary. Dr. Santana has received training in clinical pharmacy, public health, and clinical epidemiology. Her research focuses in developing novel methods to integrate the voice of patients and family caregivers in health care and health service research to improve health and health care. The methods advance person-centred care and patient-oriented research. She is the Provincial Lead, Patient Engagement, for the Alberta Strategy for Patient-oriented Research.

Ingrid Nielssen, Instructor
The instructor for the PaCER program is Ingrid Nielssen. She holds a graduate degree in Gender and Social Justice from the University of Alberta. She is passionate about including patient and community members into the research that impacts them, and believes in co-developing more inclusive approaches to participatory health research methodology and praxis. She enjoys working with the unique and innovative learners that PaCER attracts. Ingrid believes the PaCER program and methodology offers opportunity to all individuals interested in developing foundational research experience and skills. This can assure more inclusive and universal approaches to patient-centred participatory health research and engagement. In addition to being the PaCER course instructor, Ingrid is the Patient Engagement Coordinator for the Alberta SPOR SUPPORT Unit’s Patient Engagement team.

Website

Patient and Community Engagement Research (PaCER)

PaCER Publications

PaCER study Publications

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In episode 4 of the PaCER series, we talk about the complexities of Congenital Cytomegalovirus (cCMV), a common virus that can affect 1 in 200 unborn children during pregnancy. Join us as we discuss a parent-led peer-to-peer Patient and Community Engagement Research (PaCER) study about the impact of cCMV on newborns, including potential lifelong health and developmental challenges such as hearing loss, visual impairments, and developmental delays. We will discuss the importance of early diagnosis, prevention strategies, and the controversial topic of universal newborn screening for cCMV. Our guests, PaCER graduates, parents with lived experiences, and a clinician-researcher talk about this critical issue in maternal and child health.

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Laija Beaulieu is joining us from Thunder Bay, Ontario. She is a recent graduate of the PaCER program and will be starting her PhD in Health Sciences this coming fall. Laija’s academic career is inspired by her son who is affected by cCMV and has profound deafness bilaterally. Her son is the recipient of cochlear implants that electronically restores his hearing. However, living in a remote and rural area has made accessing and receiving CMV-related healthcare difficult.

Caroline Leroux is a recent graduate of the PaCER program from Montreal, Quebec. She is an osteopath and worked with her clientele for more than 10 years. Two years ago, she left her practice to be a stay at home mom and she joined the PaCER program to be part of the CMV team. Caroline's daughter Jade, who is 5, was diagnosed with cCMV at birth and has severe hearing loss with a cochlear implant and hearing aid. Caroline is looking forward to getting involved with more projects related to CMV.

Lisa Robinson is a Speech-Language Pathologist working in early education. Since experiencing her own journey with cCMV, she has become an advocate for greater awareness, prevention, detection and management of cCMV. She is driven by the belief that every family deserves the knowledge and care that is needed to improve outcomes for each child.

Marcia Bruce, is the Research Program Manager for the Reproductive Infectious Disease team at the University of Calgary's Cumming School of Medicine. As a Patient and Community Engagement Researcher she was excited to work with the CMV PaCER team as their team support. In addition to her work with the Reproductive Infectious Disease team she is also a volunteer patient advisor with Alberta Health Services and contributes as a patient research partner on several initiatives in the areas of digestive health, chronic pain and maternal health.

Dr. Eliana Castillo is a physician who works with pregnant people experiencing medical problems or infections. Her research focuses on closing the gap between what we know helps mother and babies live healthy lives and what actually happens in everyday clinical practice by partnering with patients to understand their journey during pregnancy. She co-authored the Canadian guidelines about CMV infection during pregnancy. She a Clinical Associate Professor in the departments of Medicine, Obstetrics & Gyneacology and Microbiology, Immunology and Infectious Diseases at the University of Calgary, Alberta, Canada.

Publication(s)

Perspectives of parents with lived experience of cytomegalovirus infection, on universal newborn screening for congenital cytomegalovirus (cCMV) in Canada: a patient-led qualitative study