By Carla Southward, PIRN Patient, Family, and Community Engagement Coordinator
Sarah Mooney is a Patient Partner and Advisor at Stollery Hospital and a Youth Representative with PIRN/RRPH. Sarah and I got a chance to sit down over lunch at the PIRN/RRPH 2024 Annual Meeting in Montreal. It was wonderful to get to know Sarah better and listen to her insightful ideas of how we can meaningfully bring in youth voices to research. Here is a glimpse of the conversation, I hope you enjoy learning from Sarah as much as I did!
Tell us a bit about yourself.
I’m a 3rd year nursing student at MacEwan University in Edmonton Alberta. I am originally from Edmonton and spend my summers in Newfoundland in the home my father grew up in. I am passionate about healthcare delivery, policy, and research. As a youth, I spent a lot of time in the hospital because of renal malformations resulting in complications, this has fuelled my energy to be involved in many activities outside of school, including volunteering at Stollery Hospital for over seven years, previously co-founding and chairing the Alberta Health Services Maternal Newborn Child & Youth Strategical Clinical Network (MNCY SCN) Medical Traumatic Stress Working Group, and being a member of the CIHR Institute of Human Development, Child and Youth Health (IHDCYH)'s youth advisory council for two terms. In 2022 I also completed my training as a Patient and Community Engaged Researcher (PaCER) from the University of Calgary.
What hobbies do you enjoy?
I love spending all my free time with my Godchildren in Edmonton; they make me laugh every day. I also enjoy walking in the river valley, being in nature and kayaking.
What attracted you to PIRN?
PIRN’s mission aligns with the work I do at Stollery. I like that it is patient and family-oriented and works as a collaborative to improve outcomes for hospitalized children across Canada. I met Peter through the CIHR IHDCYH youth advisory council, and he invited me to take part in helping set the top 10 research priorities for PIRN. This was important to me as the majority of my own hospitalizations have taken place in the general pediatric inpatient unit.
What do you like about the field of patient engagement in pediatric hospital medicine?
Patients and families are the ones who are going through it firsthand. They have such valuable insight; it’s a no-brainer to get their input on the research that is intended to impact them. This is especially true for youth who often feel left out of conversations and decisions about their own care and wellbeing. The opportunity for someone to take their experiences and use it in a productive way is so powerful. This is especially true when someone has a negative experience and finds the strength to turn it into something positive.
Do you have a vision for the future of patient engagement?
My vision for the future of patient engagement is that it becomes a standard in research. I can’t think of a place where they shouldn’t be involved, at least to some degree.
Looking to fellow PIRN members, including patients and families, trainees, clinicians, and researchers; is there one message you want to share with them?
Keep pushing for Patient Engagement. Although the current research climate is moving toward a strong emphasis on patient and family engagement and promoting its popularity, be prepared to continue your efforts if this popularity decreases. Continue the momentum, because research shows that it leads to better research results that are easier to implement– so everyone benefits!
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