This is patient-oriented research (POR).
It’s not just about listening: it invites patients, caregivers, students, researchers, clinicians, decision-makers, and communities to work side by side from the very beginning of research projects. The questions asked, the methods chosen, the data analysis, as well as the dissemination and use of the knowledge produced, truly reflect the needs of those they aim to serve, for research that is more human, more inclusive, and better grounded in the realities of the field.
About Canada’s Strategy for Patient-Oriented Research (SPOR)
Across Canada, SPOR embodies this spirit of partnership. Supported by the Canadian Institutes of Health Research (CIHR), in collaboration with other partners, it connects individuals, teams, and organizations who believe that lived experience must be integrated into the research process.
The SPOR Refresh 2025 highlighted the importance of partnership, equity, inclusion, reconciliation with Indigenous peoples, and strengthening long-term responsible research practices. These principles guide our collective journey toward research that is more responsible, more equitable, and better aligned with social realities.
About Engagement
Patient engagement is based on a fundamental belief: those who experience the healthcare system hold valuable knowledge. By recognizing and integrating their experiences into research, we create approaches that are more human, more inclusive, and more beneficial for all the individuals and communities involved.
The Diversity of Voices
There is no single profile of a patient partner. Anyone with experience in the healthcare system can contribute to research, whether as a patient, caregiver, or family member. This diversity of backgrounds and perspectives enriches research projects and helps teams design more concrete, fair, and better-adapted solutions to the lived realities, in order to improve health and care.
People at the Heart of Research for Better Care
Patient partners’ engagement makes projects more relevant, more inclusive, and better connected to the real-world. At PASSERELLE, patient partners are actively involved in our activities, as well as in our committees and working groups. By sharing their journeys and experiences, these individuals inspire others to engage and contribute to strengthening a culture of collaboration.
Terminology
Choosing the Right Words
The words we use shape the way we work together and give meaning to our practices. At PASSERELLE, we prefer the term ‘patient partner’ to refer to anyone who actively contributes to research through their lived experience of the healthcare system. This inclusive and recognized expression encompasses various realities: patients, persons with lived experience (PWLE), caregivers, family members, or community partners.
This term reflects the role of patients as full partners, not merely participants. It highlights the diversity of experiences, knowledge, and perspectives, and their contribution to different stages of research, making projects more relevant, fairer, and better connected to the real world and lived experience.
NEWSLETTER