With over 100 investigators, healthcare providers, trainees, community and policy stakeholders, and patient and family partner members, the Pan-Canadian Palliative Care Research Collaborative is a network of practice-focused research groups aiming to produce high-quality palliative care research.
Our members have a passion for research and are looking to be actively involved in a palliative care research network. They come from many disciplines and include patients, caregivers, trainees, policy makers, clinicians, and researchers.
Amanda Dominey is a new Patient Partner with the PCPCRC. She understands the patient experience well, having been involved with the healthcare system in Nova Scotia since she was diagnosed with breast cancer, which later advanced to stage IV, three years ago. Her treatment since the advanced cancer diagnosis has been palliative, she says, with the goal of her treatment being “a balance between extending life and comfort/quality of life.”
Because the palliative care team at her hospital is under-resourced, Amanda and her team of oncologists have had to get creative to meet her psychosocial and pain management needs. This has highlighted for her the importance of access to these types of supports.
She began a journey of learning more about what palliative care is and what interventions could help, quickly becoming interested in research. “Research is crucial to understanding exactly what kind of difference palliative care can make in the lives of people dealing with critical or terminal illness,” she says. “If we don’t examine and compare these types of interventions, we can never hope to find evidence to justify prioritizing and funding this type of care to the extent I think we should be. Now I try to get involved and use my voice and experience as a patient to highlight the importance of palliative care research whenever possible.”
Amanda’s first foray into the patient partner role was with the Canadian Cancer Society (CCS). She has since supported the organization by engaging with other patients, researchers, and students through mentorship opportunities, reviewing grant proposals, and participating in various events.
She comes to the PCPCRC via the CCS, having been excited about the national scope of the network. She brings a unique perspective as a patient from a smaller province, and says that her previous patient partner work has shown her “how crucial it is to have those with lived experience in these spaces, especially those who are from underrepresented groups.”
