Authors: Juliette Wilson-Sanchez, MSc Student, Queen's Cancer Research Institute, Department of Biomedical and Molecular Sciences, Queen's University and Farzaneh Afzali, PhD Candidate, Department of Biomedical and Molecular Sciences, Queen’s University | Editors: Romina Garcia de leon, Shayda Swann (Blog Coordinators)
As graduate students, we’re often asked how we stay motivated to continue our work after all the long nights and endless failed experiments. For us, the answer was simple - the community of patients we have met throughout our training continuously pushes us to work harder. The opportunity to see beyond the bench and hear the stories of patients affected by what we are studying provides a more in-depth perspective of our research and its impact. Over the past few years, our involvement in the local patient community, organizing events such as the Walk of Hope, has informed us of the ways in which we can support our patient community, improve the communication of our work, and tailor aspects of our research questions. These conclusions are the result of close interactions with patients within our local community. These interactions have completely shifted the way we reflect on our work - but are these interactions beneficial to the patients?
A sense of community is beneficial for cancer patients in many ways. Patients who participate in support groups have been shown to have better quality of life and improved mental health. While these support groups remain an important source of community for patients, it is important that researchers work to provide a similar sense of support to patients. Initiatives such as the Queen’s Cancer Research Institute’s Patient Engagement Network (QCRI-PEN), work towards establishing meaningful connections and bidirectional exchange of ideas between researchers and patients in the local community.
Patient engagement in initiatives such as the QCRI-PEN aims to follow Health Quality Ontario's guiding principles of patient engagement. Patients are invited to share their ideas, concerns, and desires in a trusted circle. This patient-centric approach cultivates a sense of ownership and empowerment in the patient community, making them active players in their healing journey. Participating in patient partnerships in research can highlight pressing needs in the patient community that supporters may not be aware of. For example, patient partners associated with Ovarian Cancer Canada participate and provide guidance on clinical and basic research funded by Ovarian Cancer Canada. Over the years, this has ensured that patients from across the country have felt included and heard by the research community. Studies, such as the Every Woman Study, are examples of the outcome of mutually beneficial partnerships between researchers and patients as their successful recruitment was mainly conducted using their own collaborative networks and social media. Through the relationships fostered by patient engagement, studies are able to reach a diverse group of patients and reach an understanding of what issues are more pertinent to that specific community. This information is essential for the improving quality of life for cancer patients; however, many cancer patients do not participate in patient-oriented research. One study demonstrated only 5% of cancer patients were actively engaged in research and only 26% expressed interest in doing so. Low participation may be a result of a lack of trust or a sense of partnership between researchers and patients, further emphasizing the importance of reinforcing community engagement in research.
Bridging the trust gap between patients and researchers requires mutual endeavor that benefits both parties. Trust in science and the researchers conducting the studies remains one of the barriers to patient participation in research. Reinforcing a trusting relationship through the creation of a supportive community is key to improving research and subsequently patient experience. One of the main elements we have observed as a key component of a supportive community is effective and reciprocal communication. Unfortunately, one of the fundamental reasons we have observed that keeps patients away from the scientific community is complicated science terminology. This barrier not only keeps patients and caretakers away from participating in research but also hinders the process of making informed decisions and unleashes more opportunities for misinformation to spread. Trainees have been shown to benefit from science communication courses that prepare them for this important aim alongside support from health advocates and communicators who can translate complicated scientific terminology to lay terms and also help bridge this gap. As ovarian cancer research trainees, we have learned how to communicate our research using accessible language to our community through the Walk of Hope and QCRI-PEN events that established connections with patients and provided us with feedback from our community.
As research trainees, we are committed to nurturing these bonds with our patient partners. The ongoing mutual support and shared insights from a more informed and involved community empower us to serve patients more effectively. We would love to be an inspiration for fellow trainees and researchers, encouraging them to foster these meaningful connections with their communities. These moments of connection are something we hold dear, forever grateful for the enrichment they bring to our scientific journey.