The research we conduct at Niagara Health has a profound impact on the health and well-being of our patients and communities, and contributes to better understanding some of the most significant healthcare challenges of our time with the potential to benefit patients in Niagara and across Canada.
Gail Riihimaki is a patient partner at Niagara Health, lending her experience to various initiatives, including vetting research-related grant applications to ensure the patient perspective is considered at the outset.
Health research conferences can feel like intimidating places for those not in the field.
Gail Riihimaki knows that. She also knows that someone who doesn’t work in a lab or have a research background can still make meaningful contributions to conversations about research.
So, when the patient partner was asked to review a grant application to fund a gathering of health researchers to establish local study priorities and another to support a study to strengthen research capacity in Canadian community hospitals – she made sure these initatives would be inclusive for the people who stand to benefit most from their outcomes: Patients.
“The patient voice is important at an early stage,” Riihimaki says. “Patients can feel intimidated walking into a room filled with researchers and that may impact their decision to attend. It’s about making these events accessible for patients.”
Patient partners are former patients or a family member who volunteer alongside Niagara Health staff and physicians on various initiatives. Their goal is to use personal experiences to improve the quality, safety and overall patient experience at the hospital.
Riihimaki joined the Niagara Health Engagement Network (NHEN) as a patient partner three years ago after her mother’s hospitalization highlighted areas needing improvement. Drawing on her leadership background with system-level and strategy experience, she turned a difficult experience into an opportunity to contribute to positive outcomes for others.
“The Patient Experience team was really great and kind when I spoke with them,” she recalls. “Throughout my involvement with NHEN, I’ve felt like a valued team member and that’s really important.”
“You need to get that patient perspective right at the planning phase so there’s no barrier to patients, and patient participation is absolutely maximized.”
Riihimaki’s professional background made her an ideal person to vet the grant applications for the Niagara Health Knowledge Institute (NHKI), which oversees research for the organization.
She also had a personal connection to Dr. Jennifer Tsang, NHKI Chief Scientist and Executive Director, through their volunteer work with Quest Community Health. Having seen Dr. Tsang in action, Riihimaki was eager to lend her time to the NHKI’s efforts.
When reviewing the grant applications, Riihimaki offered insights on engaging other patient partners and caregivers. She also gave advice on how to approach patients and effectively frame questions related to research.
“A patient perspective is important when research is completed but what’s great about what Jen (Tsang) is doing is she’s including patients from the very beginning when doing a grant application and before the research gets started,” Riihimaki says. “You need to get that patient perspective right at the planning phase so there’s no barrier to patients, and patient participation is absolutely maximized.”
The involvement of patient partners in helping to set research agendas and apply for grants supporting work intended for their benefit is “utterly important,” Dr. Tsang notes. However, they are often overlooked contributors.
“Most health research and clinical research is for patients,” Dr. Tsang says. “There’s a history of studies and research being done from the perspective of the researcher, however. We pick the outcome measure we think is important to look at. But if you ask a patient, they may say, ‘Well, this isn’t important to us. This might be more important.’”
This isn’t the first time Dr. Tsang has included the patient perspective at the outset of research initiative. She tapped another patient partner for input on an application for a clinical trial about sepsis.
“Using her lived experience, we included the patient voice in the design of the study, so we’re doing a study relevant to the patient and not just the clinician,” she explains.
That consideration makes Riihimaki a continued supporter of the NHKI’s work.
“What the NHKI is doing is fabulous because it’s getting the patient voice from the get-go and not running into these barriers once they’re actually funded and ready to go,” she says. “Patient experience can comprise a lot. But one of the key things it includes is high-quality, evidence-based care and that’s what the NHKI supports.”
