Moving Forward on Meaningful Patient Engagement in Research

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.


A focus group of Kingston community members living with metabolic syndrome share their suggestions for future research.

“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. Amer Johri metabolic research
Dr. Amer Johri shares his latest research on metabolic syndrome with local community members. 

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.”


Brand new space dedicated to patient-oriented research in Kingston /// Photo and feature photo: Matthew Manor, Kingston Health Sciences Centre

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.

 

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Add Your Voice

Want to share your insights on why health research matters for Ontario? Email or call Elise Bradt at ebradt@caho-hospitals.com, 416-205-1469, or direct message or tweet at us on Twitter at @CAHOhospitals.

Read more Patients + Research posts and share your own insights on Twitter with the hashtag #onHWS. To learn more about how health research makes Ontario healthier, wealthier and smarter, visit our impact page, and check out our other blog posts and videos.

Patients + Research: Annette McKinnon

At 32 I was a mom to two boys and working part time. When I started to have problems with my hands, feet and overall exhaustion, of course I went to see my doctor. He kept telling me I was just a normal busy mom. This caused a delay of more than a year before I got a diagnosis of Rheumatoid Arthritis. By then my joints had a lot of damage. It was hard for me and for my family to accept this new ‘normal’ in our lives.

Patient Advocate Annette McKinnonOften chronic disease makes people feel depressed and I was no exception, but between my determined physio and a clinical trial of a new drug that my doctor suggested, I was able to reach a turning point.  The positive feedback I got from one of the trial doctors made me realize that even with health problems I could change my life through my own actions.

That encouragement led me to try to find and use research papers from PubMed and to share what I learned about RA in private health groups and on Twitter.  A friend called it evidence-based tweeting.

Through these efforts I attended an IDEO design thinking workshop. Every patient was partnered with a group of Health Care Professionals and we spent a day of developing a prototype solution for a patient issue – mine was communication between doctor and patient. We created very effective solutions and I thought my team was brilliant. It wasn’t till the next day that I credited myself with having been a team member too.

Because of this conviction of the value of patient knowledge and the patient voice I have persisted in trying to be a patient who is involved in many aspects of the health system.

The first time I was involved in research, as a patient member on a research team, I thought I was helping out, and ended up as a co-author.

Since then I have been on research teams in Ontario applying for grants and also in doing the work after funding. It takes a lot of effort on both sides. The patient voice in research is especially necessary – I had found it shocking in the past to find doctors and researchers used to be the only ones who had input into which results were important to research, rather than finding out what was important to patients.

It has taken a long time for me to become a partner in research, rather than a subject who is being studied. This would have been impossible even ten years ago. I’m so pleased that at last the culture of health care is moving towards the inclusion of patients in meaningful ways.

Anyone who is an active patient will tell you that it is almost always done on a volunteer basis, but being involved has definitely made me healthier, and that’s worth more than money.

 

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Add Your Voice

Want to add your voice to the Patients + Research blog series? Email or call Elise Bradt at ebradt@caho-hospitals.com, 416-205-1469, or direct message or tweet at us on Twitter at @CAHOhospitals.

Read more Patients + Research posts and share your own insights on Twitter with the hashtag #onHWS. To learn more about how health research makes Ontario healthier, wealthier and smarter, visit our impact page, and check out our other blog posts and videos.