“I wouldn’t be here today without medical research, so I’m happy to give back by sharing my lived experience as a patient,” -Maureen Smith.
As an elementary school teacher with a rare metabolic disease, Ottawa resident Maureen Smith has inspired not only her students, but also hundreds of doctors, researchers and health policy experts.
“I wouldn’t be here today without medical research, so I’m happy to give back by sharing my lived experience as a patient,” said Maureen.
Maureen has served as a patient partner on dozens of studies at The Ottawa Hospital, the University of Ottawa and beyond, collaborating with researchers to understand patient perspectives and integrate patient partners into their research, so they can make their studies more relevant, applicable and understandable.
Maureen also chairs the Patient Partner Working Group of OSSU, Ontario’s patient engagement network, which was recently awarded $68 million from the Government of Canada (through the Canadian Institutes of Health Research) and the Ontario Ministry of Health.
The successful funding application was led by Dr. Dean Fergusson, Scientific Lead for OSSU and Scientific Director of The Ottawa Hospital’s Clinical Epidemiology Program.
“Maureen and other patient and family partners play a crucial role in making sure that research reflects the patient experience and patient priorities,” said Dr. Fergusson, who is also a professor at the University of Ottawa. “By engaging patients as partners right from the beginning, we can make sure that our research makes a difference for patients and the health care system.”
The Ottawa Hospital builds on world-leading expertise in patient engagement
“By engaging patients as partners right from the beginning, we can make sure that our research makes a difference for patients and the health care system,” -Dr. Dean Fergusson.The Ottawa Hospital was one of the first hospitals in Canada to champion and support patient engagement in research. Today, the hospital plays a lead role in OSSU and is home to the first centre of its kind dedicated to promoting and facilitating patient engagement in research, called OPERA (the Office of Patient Engagement in Research Activity).
“One of the key goals of OPERA is to champion patient engagement and ensure that is done properly,” said Dr. Fergusson. “Patient engagement must be genuine and reflect the diversity of our patient population to be meaningful and lasting.”
OPERA is a collaboration between The Ottawa Hospital’s Ottawa Methods Centre (a one-stop-shop for helping researchers design, conduct and share the results of their research) and the Patient and Family Engagement Program.
The Engagement Program works with more than 200 patient advisors to support clinical, administrative and research activities at The Ottawa Hospital. These patient advisors are currently involved in more than 70 research projects, helping with everything from defining research questions and determining what data should be collected, all the way through to analyzing results and sharing these with the broader community.
“The response from our patients has been absolutely phenomenal,” said Dr. Fergusson. “We can’t thank them enough for their interest in research and their willingness to contribute.”
New funding catalyzing patient-oriented research across Ontario
The new funding for OSSU will help researchers at The Ottawa Hospital and across Ontario take patient engagement to the next level. Moving forward, areas of focus will include virtual care, Indigenous health and engaging marginalized populations in research.
Dr. Fergusson notes that support from generous donors, through The Ottawa Hospital Foundation, has also been key to supporting patient-oriented research and patient engagement at The Ottawa Hospital.
“Thanks to generous donors, we are able to provide free consultations to all members of The Ottawa Hospital who are looking for advice on patient engagement or other aspects of research,” said Dr. Fergusson. “No other hospital in Canada offers such a wide variety of research support services and I think that’s one of the key reasons we’ve been able to lead the way in conducting research that makes a difference for our patients.”
Patient engagement key to award-winning COVID evidence network
When COVID-19 hit in 2020, patient partners like Maureen Smith wanted to help, just like most doctors and researchers around the world. But could patients really be meaningfully engaged in research that was moving at lightning speed?
As a key member of the COVID-19 Evidence Network (COVID-END) Maureen showed that the answer was a resounding ‘yes’. The network, which is co-led by researchers at The Ottawa Hospital and McMaster University, recently received a major international prize for getting reliable and timely COVID-19 evidence summaries to patients, clinicians and policy-makers.
“COVID-END researchers were working around the clock to interpret and analyze all the latest evidence about COVID-19, but we still managed to engage patients and citizens in the process of producing rapid evidence syntheses and ensuring that summaries were relevant and understandable,” said Maureen, who leads COVID-END’s citizen-partnership strategy and is supporter-in-chief of COVID-END’s citizen partners. “COVID-END and The Ottawa Hospital are real pioneers in innovative patient and citizen engagement in evidence synthesis.”
Other recent examples of patient-oriented research at The Ottawa Hospital include an app that provides personalized risks after surgery, the development of patient-focused outcomes for subarachnoid hemorrhage and a study that explores how patients can be engaged in laboratory research.
Patients who are interested in partnering with a research team as a patient advisor can speak with their care team, indicate their interest in myChart (the hospital’s electronic medical record) or sign up directly through the hospital’s website.
The Ottawa Hospital is a leading academic health, research and learning hospital proudly affiliated with the University of Ottawa and supported by The Ottawa Hospital Foundation.
