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.

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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&

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.

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

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

In Episode 3 of the PaCER Series, our guests Jamie Hodge, Marcia Bruce, and Dr. Elena Lopatina talk about the Patient and Community Engagement Research (PaCER) internship study: "Understanding the chronic pain journey and coping strategies that patients use to manage their chronic pain, a qualitative, patient-led, Canadian study."

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Marcia Bruce is a patient advisor for Alberta Health Services and a patient research partner at the University of Calgary. As a Patient and Community Engagement Researcher, she is focused on using patient-informed research evidence to inform and improve healthcare planning, policy, and practice. Marcia is currently contributing to several patient-centered research projects and initiatives in the areas of digestive health, chronic pain, and infectious disease.

Jamie Hodge is a recent graduate of the PaCER program and has been a volunteer for Alberta Health Services for the past 7 years. He has actively been involved in various Health Quality Councils and joined clinical staff and Unit Managers in Leader Rounding activities. He has also assisted the Advanced Geriatric Unit staff in developing a comprehensive strategy to improve the patient and family experience. He was recently appointed as one of two public representatives on the Provincial Primary Care Network Committee which reports directly to the Minister of Health with recommendations specific to the roles, responsibilities, and funding requirements of zone and local Primary Care Networks.

Dr. Elena Lopatina is a Senior Scientist with the Alberta Virtual Chronic Pain Program and the Alberta Pain Strategy, Strategic Clinical Networks™at Alberta Health Services. She is also an Adjunct Assistant Professor in the Department of Community Health Sciences, Cumming School of Medicine at the University of Calgary. Her embedded research program focuses on the design, implementation, evaluation, and ongoing development of the Alberta Virtual Chronic Pain Program and shaping the learning health system for chronic pain management in Alberta.

Publication(s)

Understanding the chronic pain journey and coping strategies that patients use to manage their chronic pain: a qualitative, patient-led, Canadian study

Episode Introduction
In this episode, we talk about the Re-Purposing the Ordering of Routine laboratory Tests (RePORT) study, which is being conducted and implemented in Alberta and British Columbia. Hospitals frequently conduct routine blood tests, which not only cause patient discomfort but also significantly contribute to healthcare waste. Choosing Wisely Canada highlights that repetitive, “routine” blood tests are linked to increased mortality risks, advising against their repetitive testing in hospitalized patients.
The RePORT study adopts an innovative approach by involving individuals with lived experiences as active and equal partners throughout the research study. This collaborative effort is crucial in gaining insights into patient perspectives and experiences as well as enhancing engagement with in-hospital laboratory testing.

Guest Bios
Dr. Anshula Ambasta, is a general internal medicine physician, an assistant professor in the Department of Anesthesia, Pharmacology and Therapeutics at UBCs faculty of medicine. Her research focuses on improving the value of healthcare services using evidence-based implementation strategies. Dr. Ambasta is the Principal Applicant for the CIHR funded research study on Re-Purpose the Ordering of Routine laboratory Tests in hospitalized medical patients.

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. She has co-chaired the SPOR Patient Engagement National Community of Practice (SPENCoP) and is a Co-Chair for the RePORT Patient Advisory Council. 

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 and patient co‐designed qualitative study (September 2023)

Working together in health research: a mixed-methods patient engagement evaluation (August 2023)

In episode 25 of PEP Talks, we speak with Frank Gavin, the former chair of the Public Advisory Council for the Health Data Research Network Canada and former director of Citizen Engagement for the National Child Bright Research Network. Gavin shares his knowledge and insights on patient engagement in health research and person-centered care, discussing what works well and what could be improved. We will also explore advice and suggestions for researchers as well as patient and family partners, and how to engage with each other in a meaningful and productive way.

In Episode 2 of the PaCER series, our guests Veronika Kiryanova and Dorothy Nelson talk about their PaCER internship study, "Understanding Virtual Healthcare Experiences of Adults Living with Diabetes and/or their Caregivers in Alberta during the COVID-19 Pandemic", a patient-led peer-to-peer study. Veronika and Dorothy, recent graduates of the Patient and Community Engagement Research (PaCER) program at the University of Calgary, share patient insights, concerns, and recommendations, from their PaCER internship study. The PaCER program works toward transforming the role of patients in health system research, practice, planning, and policy, striving to foster a more sustainable and impactful approach to person-centred care.

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Dorothy Nelson has been living with Type 1 diabetes since 1971 and more recently has been diagnosed with heart disease, a potential complication of her diabetes. Dorothy has been partnering in research since 2016 and is a recent graduate of the PaCER program.

Veronika Kiryanova graduated from the University of Calgary as a Neuroscientist, and after traveling for 1 year had a profound neurological event. Her lived experience led her to become a mental health advocate, patient research partner, and advisor. She has worked on multiple projects, presented at conferences, been a part of grant reviews, and is a recent PaCER graduate. 

Poster presentation

https://cumming.ucalgary.ca/research/person-centred-care/training-and-events/person-centred-care-winter-forum/pcc-winter-forum-virtual-poster-room

By PEP Talks is licensed under a  Creative Commons License.

In episode 23 of PEP Talks, Colin Penman talks about how people with lived experiences can engage with healthcare and health research. Penman is a graduate of the Patient and Community Engagement Research (PaCER) program at the University of Calgary. He shares his learning as a patient partner in research, as well as a patient and family advisor with the Alberta Strategic Clinical Networks (SCNs). Colin Penman describes the positive as well as the negative experiences he has had as a patient partner, and what can be done to mitigate those negative experiences. Meaningful communication is a balance that both the patient partners and the researchers have to make an effort to sustain. 

In episode 26 of PEP Talks, Master's student at the University of Calgary Farwa Naqvi shares her methods for and insights from her mixed-methods thesis study on mental health challenges faced by immigrant and refugee youth in Alberta. We delve into the lived experiences of these youth, their priorities, and how their voices and insights can drive positive change to shape improvements in health care. Youth from Calgary, Edmonton, Cold Lake, Brooks, Red Deer, Lethbridge, and more were recruited to participate in focus groups for this study. Naqvi expands on her findings of what is important for youth in terms of their mental health, and how that compares to what adult academics, community organizers, and facilitators think is important for youth mental health.

Bio
Farwa Naqvi is a University of Calgary graduate holding a Medicine bachelor specializing in Community Rehabilitation and Disability Studies. Currently, she is in a MSc/PhD stream studying Immigrant and Refugee Youth Mental Health in Alberta. Farwa has done research on HIV/AIDS in correlation to people with disabilities. Some of Farwa's other research projects are in Sleep medicine (Quality improvement), Palliative care and Oncology, and patient engagement. Farwa's personal interest is in HIV/AIDS and she continues to pursue that field of study.

University of Calgary 3-minute thesis presentation on YouTube
2022 UCaglary 3MT Finals- Farwa Naqvi