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PEP Talks
Welcome to PEP Talks, the Patient Engagement Podcast brought to you by the Alberta Strategy for Patient-Oriented Research SUPPORT UNIT (AbSPORU) Patient Engagement Team.
Join us for insightful conversations featuring a diverse array of voices, including patient, family, and community research partners, academic researchers, healthcare providers, policy-makers, and other key collaborators on the topic of partnerships in patient-oriented research and patient engagement in health research and health care! Together, we explore innovative ideas, share experiences, and highlight the importance of collaboration in advancing the science and practice of patient engagement in health research.
PEP Talks
Cytomegalovirus with Laija Beaulieu, Caroline Leroux, Lisa Robinson, Marcia Bruce & Dr. Eliana Castillo (PaCER Series: EP 4)
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.
Bios
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.