Patients Canada is part of a national coalition funded by the Canadian Institutes of Health Research (CIHR) that is putting patients and family caregivers at the centre of health research, and we're eager to share our progress.
We sat down with Alies Maybee, SPOR Team Lead and Patient Advisor with Patients Canada, to talk about the new landscape of patient partners in research, and how this is contributing to the big picture of an improved healthcare system.
Alies: It was Sholom Glouberman, Founder of Patients Canada, who initiated the relationship – he submitted a proposal that was truly in the spirit of SPOR. It was enthusiastically received and here we are!
We’re conducting a novel demonstration project designed to understand how patients can be engaged in health research. As a network of informed Patient Advisors, we’re moving beyond doing research on patients to being engaged as partners on those research teams. We're identifying areas of research that are priorities for patients and learning how to collaborate with researchers all while bringing our perspectives and insight to the work. By our understanding, this is unprecedented.
Our work is funded by the Ontario SPOR Support Unit (OSSU), and it’s a fruitful and supportive partnership.
Tell us about the work. How are patients partnering with research teams?
Alies: This is a five-year project, however we expect the work to continue beyond the end of SPOR. We divided the project into two streams.
In Stream One, some of our Patient Advisors are partnering with various health research teams. Patient Advisors are attached to seven projects that are in various stages and we’re in talks with three other teams.
I’ll offer an example. Brian Clark is a Patient Advisor in a project led by Dr. John You of McMaster University’s Faculty of Health Sciences. The aim of this project is to improve decision-making about goals of care during serious illness in late life, and Brian will be highly engaged with the research team during the project planning and preparation of a grant application to CIHR. The team will create of a bundle of tools to help patients, families and healthcare workers make better decisions together, so that patients receive the compassionate care that they want at this critical time in their lives.
Ultimately this stream will lead to practical tools that will support the patient-researcher partnership.
In Stream Two we’ll look at how patient experience can drive research and measurement to ensure that the future of health research reflects patient priorities. We identify those priorities by applying our Key Performance Targets (KPTs) process. With this process we examine our health experiences for themes and trends that suggest concrete areas for meaningful improvement from the perspective of patients and family caregivers.
We have already used our KPTs to influence and inform the questions included in primary care patient surveys developed by Health Quality Ontario (HQO) and the Association of Family Health Teams of Ontario (AFHTO).
Here’s another example. We’re partners in a project with Dr. Samuel Vaillancourt and others at St. Michael’s Hospital in Toronto and the Montfort Hospital in Ottawa to involve patients in quality measurement and improvement in the emergency department (ED). Dr. Vaillancourt intends to formalize a way of receiving feedback on his work as an ED physician so that he can continuously improve his patient care. Specifically, we will develop Patient-Reported Outcome Measures (PROMs) for the ED. To date, no PROM has been developed for ED care so we’re embarking on new territory.
This research team is similar to Stream One in that the team includes two Patient Advisors, myself and Adèle Copti-Fahmy, who’s based in Ottawa. Together with the team, we’ll develop a questionnaire to be given to patients shortly after their discharge from the ED. This information will form the initial basis for the PROMs.
In parallel, Patients Canada will continue working with the KPT process to identify outcomes that matter to patients after their experience in the ED. We hope to see if our findings confirm or augment the findings derived from conventional methods.
The role of Patient Advisors within this work is significant. Can you shed light on your experience in this project, as well what it means to be a Patient Advisor?
Alies: It’s exciting, to say the least. I’m both a Patient Advisor and Team Lead for this project, so I’m tasked with managing the project, supporting my fellow Patient Advisors, participating in some of the teams and liaising with our research colleagues.
Interestingly, the role of a Patient Advisor is relatively new, and it’s particularly new to health research. There exists a limited amount – and that’s generous – of research on the value of involving patients in research, so we’re proud to be in the forefront of doing this.
Patient Advisors have come to be known within a hospital setting, where they collaborate on working groups to co-design processes and procedures to guide patient-driven improvement. Now the research world is seeking to partner with patients in part because it’s required in order to gain research funding. As I see it, this is partly what’s driving this emergent world of patient-centred research. And rightly so! Health research in Canada is largely funded by the public – it’s designed to improve our health – and, as such, we have a strong role to play in setting research priorities.
In the context of this work, Patient Advisors co-develop and validate the research questions, co-design the methodologies used and provide guidance to the recruitment of patients in studies. We also participate in the knowledge translation of the research findings and the dissemination of those findings through our networks. This last task is significant, as succeeding here will hopefully spur the participation of new Patient Advisors in future research programs as well as raise public awareness of the work’s success.
Realistically, everyone must be willing to learn to make this partnership work. Patient Advisors will need to expand their knowledge of research, and researchers must build their understanding of meaningful partnership with patients.
Why should this work matter to patients?
Alies: SPOR demonstrates a commitment to progress, as does the growing movement of Patient Advisors. I believe this work echoes the sentiment of Canadians who share their health experiences with us, those who want to see real, concrete improvements to the health system. We’re entrusted with their stories and this is what we bring to the table.
We need to hear and understand the health experiences of people living across Canada – the good and the bad. Those shared experiences are integral to our ability to make the right kind of impact. People who have lost someone or who have endured a negative (or positive) health experience want it to mean something, which is why our tagline “make your experience count” resonates with people.
How can someone interested in this work get involved?
Alies: I encourage people to share their experiences within healthcare. It’s daunting for some, so we’re here to help. Patients Canada is a network of independent, informed and engaged Patient Advisors, and we aim to expand this network across Canada to support others engaged in similar work. We’re stronger together.
Visit our SPOR project page to learn more about this work. If you're interested in getting involved, or if you have questions or comments, please contact us.