Moving forward on meaningful patient engagement in research

October 05, 2017

​When patients and families have a place at the table, Ontario research hospitals can do a better job making our province healthier, wealthier, and smarter. As we have heard from so many patients, families, and patient advocates in our Patients + Research blog series, the patient voice plays an invaluable role in supporting, improving and empowering health research.

As part of our strategic plan, CAHO and its members are committed to driving best practices in patient and public involvement, engagement and participation in health research. To move this forward, CAHO established a Community of Practice comprising patients, caregivers and hospital staff from across our member hospitals. Collectively, this group will drive meaningful patient engagement forward by championing and implementing best practices in their own communities, and across the province.

During our recent visit to Kingston Health Sciences Centre for the grand opening of the W.J. Henderson Centre for Patient-Oriented Research, we saw many examples of meaningful patient engagement. Dr. Amer Johri, a clinician-scientist at the Kingston Health Sciences Centre and a Queen's University professor, is one such example. Through his work on metabolic syndrome – a complex condition that includes obesity, high blood pressure, high cholesterol and diabetes – with the CINQ lab (Cardiovascular Imaging Network at Queen's), Dr. Johri is leading the way on involving patients in the research process.

Recently, Dr. Johri and his team invited Kingston community members living with metabolic syndrome to share their experiences and, more significantly, to suggest where future research efforts should be directed.

"Hearing the patient perspective is critical to advancing research and improving care. We can enable patients who live with this condition every day to guide future research, programs and care," said Dr. Johri. "This focus group method has had a meaningful impact on our work. That's not only exciting for how we conduct studies within our own lab, but hopefully it can inspire other research partners to involve patients in their process and improve the quality of their studies by making modifications based on patient feedback."

Dr. Johri's approach is one example of the work being done across CAHO hospitals to move forward on meaningful patient engagement in research. His focus group was a collaboration between the CINQ lab and Metabolic Syndrome Canada. The CINQ Lab is funded by the Canada Foundation for Innovation and the Heart and Stroke Foundation of Canada. 

Dr. Johri is one of many Kingston clinicians who will now be able to conduct research and meet with patients at the new W.J. Henderson Centre for Patient-Oriented Research, which opened on September 11, 2017. He hopes to host a yearly Metabolic Syndrome Day for Kingston community members at the new research facility.

"This new space gives us a place to host events, meet with patients and families, and talk about their experiences," said Dr. Johri. "Patients now have a 'home base' for participating in research. A place that is familiar, welcoming and belongs just as much to them as it does to the researchers and hospital staff."

The new facility adds 10,000 square feet of dedicated research space to the Kingston General Health Research Institute, which is home to 700 active research projects, 273 active clinical trials, 250 researchers, 153 students and trainees, and 313 research staff.

By creating a space for partnership and collaboration among scientists, treatment teams, patients and families, this new facility will benefit the Kingston community today, while serving as a guidepost for Ontario health research tomorrow.

Learn more about how health research makes Ontario healthier, wealthier and smarter at www.healthierwealthiersmarter.ca and share your own insights on Twitter with the hashtag #onHWS.

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