Patients need to be involved in all aspects of research to ensure questions and results are relevant. Engaging patients is thus an integral component in the development and implementation of all elements of SPOR. For more information and a video about reasons to engage patients in research, please visit Patient Engagement – CIHR (cihr-irsc.gc.ca).
YSPOR applies a broad understanding of the term “patient”, including not only individual people with lived experience (PWLE) of the health system and their families or caregivers, but also communities, with an emphasis on Indigenous communities, and Yukon First Nations. YSPOR is committed to partnerships with PWLE to ensure that the health research is relevant to the Yukon context and promotes improved health outcomes.
Partnering with PWLE ensures that the perspectives of those who have had significant interactions with the Yukon’s healthcare system are integrated into research. PWLE play an important role in identifying health research priorities and creating knowledge translation plans to ensure the research is conducted with a purpose and that the findings are easily accessible. Together, this helps improve health care experiences and outcomes for those facing shared challenges.
Previously, health research conducted in the Territory has lacked relevance to the people of the Yukon and often findings were not shared with research subjects. For example, researchers have studied Yukon First Nations communities, engaging with community members, but without sharing their findings with those directly involved upon project completion. This is extremely damaging to communities and their future relationships with researchers who intend to conduct relevant and ethical research that has the potential to benefit a given community. Processes like research agreements and data management strategies are necessary to ensure research is conducted ethically. This means that communities are engaged as partners in research, their relationship with researchers is bidirectional, and the findings are accessible to the community.
YSPOR exists to support the development of ethical health research in the Yukon. We are the first ever health research unit based in the Territory. Given that we are located in the Yukon, we have the capacity to travel across the territory to engage with communities, strengthen relationships, identify health priorities, and support research that matters to Yukon residents.
YSPOR can help ensure your planned research project is patient-oriented and respects all ways of knowing, being, and doing. Contact yspor@yukonu.ca to learn more.
If you are someone with lived experience who wants to find a way to become involved in health-related research and help build research capacity in our Territory, please visit Patient Partner/PWLE to learn more.