The Pan-Canadian Palliative Care Research Collaborative (PCPCRC) is recruiting additional patient or caregiver partners to help shape the future of palliative care.
The primary role of a patient/caregiver partner is to ensure the PCPCRC and its members’ studies are patient-centered. The patient/caregiver partner brings their personal experiences to help us focus on meaningful patient outcomes, understand the patient’s point of view, and develop effective ways to communicate our studies with patients.
Debi Lascelle lives in Ottawa, Ont. She joined the PCPCRC in January, 2018, but her involvement in research started long before that. In 2010, she was volunteering at a local hospice residence where she discovered a research study testing whether a CT scan can detect lung cancer before it grows in severity.
Debi didn’t feel sick at the time, but she met the recruitment criteria to join the study and decided to participate. As part of the study, she underwent a CT scan, through which she discovered she indeed had early-stage lung cancer.
A cancer diagnosis is never easy, but she’s grateful they found it early. Usually, by the time lung cancer is detectable through traditional methods, treatment is much more difficult. Thankfully, the study’s early-detection of her tumor allowed for a less arduous treatment plan and recovery. A relatively simple surgery meant she could skip the chemotherapy and radiation.
This positive experience inspired Debi to give back to the research community, which is how she eventually ended up at PCPCRC as a patient partner. She now uses her voice to help inform palliative care research and encourages others to do the same if they’re up for it. As a patient partner, she helps palliative care researchers keep patients front-of-mind as they design and conduct their studies. Working with doctors can sometimes be intimidating, but she firmly believes in the value of her contribution.
“When participating in research, you’re contributing, you’re benefiting, you’re giving,” Debi explains. It’s a way to participate and give back to the health community as well as patients. “Until they know us, a researcher can be labouring away in a silo, unaware if their research will be impactful to patients”, she continues. “We can help ensure research is patient focused and centered.”
It also helps that Dr. James Downar, the founder and co-chair of PCPCRC, and his team create space and take their patient partners seriously. Since day one, the team made Debi feel welcome, listened to her feedback, and took her insights to heart.
“These people are great, they really are,” said Debi. “That’s why I stay involved.”