Patient Experience and Engagement in Research Program
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The NHKI's Patient Experience and Engagement in Research Program is led by Heather O'Grady, PhD, Early Career Research Scientist at the NHKI.
Patient and Family Engagement (PFE) in research means that patients and their families who have lived experience of an event or condition work together with researchers to influence health research. Patients and families who participate in PFE are often called patient and family partners. The essence of PFE comes from the saying, "Nothing about us without us" — research done about a specific population should always be done with representatives from that population.
At the NHKI, we are committed to increasing meaningful engagement of patients and families throughout the research process. By doing so, we hope to create a research environment that is accessible, relevant and meaningful to patients and families accessing care at Niagara Health and to the broader Niagara community.
NHKI Patient and Family Engagement in Research Committee (NHKI-PFEC)
The NHKI Patient and Family Engagement in Research Committee keeps the patient and family voice at the centre of our research — shaping research priorities, study design, and the outcomes that matter most to patients.
The committee brings together patients, family caregivers, researchers, and healthcare professionals, and is co-chaired by a patient/caregiver representative alongside a researcher — a partnership reflected in everything it does, from guiding research projects to educating the community and welcoming new patient partners.
Meet Our Patient Partners
Our inaugural patient and family partners bring lived experience of care at Niagara Health and a shared commitment to making research relevant, accessible, and meaningful.
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Sara Pot
Sara Pot is an educator, facilitator, and parent of four, including two fantastic teens who require constant care specific to their rare diagnosis. Influenced by her family's journey through both the hospital and pediatric rehabilitation systems, Sara is involved with training and developing patient & family engagement strategies in health research and health practice. Much of her work is with RareKids-CAN, Canada's newest paediatric rare disease clinical trials and treatment network and CanChild's Family Engagement in Research Program. In addition to several volunteer advisor roles, Sara is a writer and presenter on the topic of faith, disability & belonging - and has a passion for tending the family's butterfly garden.
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Jody Stapleton
Jody Stapleton is a Registered Nurse with more than 15 years of healthcare experience and a master's degree in International Public Health. Having experienced healthcare from both the provider and the patient perspective, she is passionate about building a health system that is compassionate, collaborative, and truly centred on patients and families. Her clinical background spans infectious diseases, public health, community care, pediatrics, and geriatrics. She currently owns and operates an RN-led mobile nursing practice providing advanced foot care across the Niagara region. As a Patient Partner with Niagara Health, Jody works alongside healthcare teams to ensure that lived experience shapes education, research, quality improvement, and the delivery of care.
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Gail Riihimaki
Gail Riihimaki has been a Patient Partner with the Niagara Health Engagement Network for more than three years, bringing the patient voice to a range of initiatives across the organization. She currently co-chairs the Niagara Health Patient Experience Steering Committee, which brings together staff and Patient Partners committed to improving the patient experience at Niagara Health. Gail contributes the patient perspective to the Niagara Health Knowledge Institute, which works to improve patient care by embedding research into clinical practice at Niagara Health.
Want to get involved?
Patient partners are recruited through the Niagara Health Engagement Network.
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