Are We There Yet? A Reflection on the State of Patient-Oriented Research in Canada
There has been an international push for patient engagement in health research, grounded in the recognition that integrating patient voices in research enables us to better address the health needs and care priorities of communities. It is a simple concept that incorporating the perspectives of those with lived experience in research allows for more nuanced discussions of healthcare issues and, in turn, more relevant care solutions. Despite this, there continues to be spheres where patient-oriented research (POR) is underutilized. Greater structural support for POR is required to ensure patient engagement becomes the norm rather than an infrequent exception.
Why patient engagement has yet to be systemically integrated across Canada’s healthcare and research systems is vexing. As medical students, we are taught repeatedly about the importance of meaningful patient collaboration and what it means to be a true health advocate. We no longer question the fact that we, as future physicians, ought to provide person-centred care and approach all therapeutic relationships as a true partnership of equals. While this is widely accepted as the gold standard in patient-physician relationships, the value of patient partnerships in the broader research landscape has yet to receive the same regard.
The reasons for the delayed uptake of POR in all health research sectors are multifactorial. For one, the notion of conducting and/or participating in POR can be highly intimidating for researchers and patients alike. Information on the benefits of patient engagement, where to access patient partners, and how to budget for the additional team members is poorly advertised to researchers. Information explaining how to get involved in research and what it might look like for prospective patient partners is similarly hard to get a hold of. Beyond this lack of awareness, current research productivity metrics often fail to acknowledge the time and financial resources needed to engage patient partners and advisory committees meaningfully throughout the research process. While there may be growing appreciation that patient engagement, if it is to be done properly, needs to prioritize the cultivation of mutual-respect and trust between all members of the research team, there continues to be instances of tokenistic engagement that undervalues the impact of patient partnership. This further disincentivizes community members from wanting to take part in future research projects and perpetuates issues for POR sustainability and limited patient partner access.
Despite current barriers to systemic POR uptake, as future care providers and clinical investigators, it is important that we champion the practical and cultural shifts needed to facilitate widespread use of patient engagement across our healthcare and research systems. As we enter clinical and academic spaces, we must be cognizant of the fact that while we bring with us our own positionality, expertise, and lens, patients do the same. While we may have a learned understanding of what it is like to be a patient in our healthcare system, we are limiting the richness and accessibility of our work by not co-constructing our research alongside those with ongoing lived experience accessing care. Throughout our career, medicine will always be driven by the pursuit to improve population health and patient care experiences - as highlighted in the triple, quadruple, and now quintuple aim frameworks. In the process of trying to improve these outcomes, we need to remain steadfast to the idea that if we are to truly help our patients, we must first listen to their needs.
Moving forward, Canadian patient partners and patient-oriented researchers are calling for the Strategy for Patient-Oriented Research (SPOR) to be better reflected in each pillar of the Canadian Institutes of Health Research (CIHR) - biomedical, clinical, health services, and population health research. In the coming years, I also hope to see the creation of organizational and administrative positions for patient partners in academic centres that would further facilitate cultural shifts and address persistent barriers to widespread POR utilization.
So, to answer the question posed in my title, while conversations on POR have become far more frequent in recent years, I whole-heartedly believe that POR in Canada has far from reached its ultimate destination.
Useful Resources:
In closing, I wanted to also highlight one of the primary research organizations in Alberta that is helping to make POR in health research more accessible and commonplace. These resources may also be helpful for anyone who is interested in pursuing POR, but unsure of where to start. A central hub of POR resources in the province is the Alberta SPOR SUPPORT Unit (AbSPORU) whose goal is to build researcher capacity for POR and, in doing so, strengthen health system knowledge in Alberta. AbSPORU provides written materials and training modules to support researchers at any stage in their careers. The AbSPORU patient engagement team specifically offers templates and guidelines for compensating patient partners, addressing ethical considerations for POR, and generating a terms of reference template. Under AbSPORU, Albertans4HealthResearch also offers an online platform through which researchers can advertise their POR projects and connect with interested patient partners.
For additional information on POR, I have found these resources to be incredibly helpful:
Sarah Rabi: University of Alberta (Faculty of Medicine and Dentistry), Alberta Medical Association Student Advocacy Committee
