Arlene Desjarlais is a patient partner with Can-SOLVE CKD who has noticed similar changes over the past few years. She joined the network in 2017 to share her experience as a caregiver to her beloved husband, Glen Desjarlais, who had passed away after many years of living with kidney disease and other health complications.
Desjarlais notes that, at the beginning, she felt that many researchers presented their own ideas to patient partners for feedback. “But now it’s completely different,” she says. “They take the time to listen [to our ideas and experiences] and sometimes they change their research patterns based on what we say.”
She also emphasizes the power of patient partner stories.
Reciprocal relationships are not the only force shaping the network’s approach to patient-oriented research, however. Various working groups have created novel tools to support the learning, training and implementation process for patient-oriented research.
Desjarlais points to Wabishki Bizhiko Skaanj as a particularly valuable example. The learning pathway aims to eliminate racism towards Indigenous peoples in the research setting and build more cultural competence among research professionals. Thanks to the learning pathway and leadership from members of the Indigenous Peoples’ Engagement and Research Council (IPERC), the network has taken important first steps towards a more inclusive and safe space for Indigenous people to participate in and lead research.
Desjarlais describes Wabishki Bizhiko Skaanj as a “gem” among Can-SOLVE CKD’s many programs and trainings, and looks forward to the pathway being more widely adopted and built upon in the future. As well, she looks forward to more patient partners coming on board for Phase 2 of Can-SOLVE CKD, after seeing what has initially been accomplished through the network’s approach to patient-oriented research. “I just see all the potential in the world with all of these changes [that are happening now] for patients and how things are done differently,” she says.
“In reflecting on the first five or six years, obviously I’m incredibly proud to have been a part of this, despite my initial hesitancy to become involved,” says McCormick. “The positive impact that we’ve been able to make and the life-long friendships that I’ve made through this group have certainly made it all worthwhile.”