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Patient input helps improve care for young adults

BC Cancer patient and family partners offer their lived experience to improve patient care.
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​Lise Berube was diagnosed with metastatic breast cancer at the age of 34. In 2019, the patient safety consultant for Island Health joined BC Cancer – Victoria's Regional Patient Experience Committee (RPEC). RPECs help integrate the patient and family voice in care planning and decision-making at regional centres. They advance best practices for patient experience, engagement, and education. These committees are made of patient and family partners and staff members who work together to advance people-centred care.

"I felt it was important to have representation from the young adult community, and especially the young adult metastatic community, a population that is largely underfunded in cancer research and often goes unrecognized," said Lise. "I have been lucky to receive compassionate care at BC Cancer, and I welcome the opportunity to further improve patient care by working to reduce the barriers patients may face throughout the duration of their treatment, especially for those –like me– with ongoing treatment."

BC Cancer's Patient and Family Experience team strives to create an environment where cancer care is centred around the patient. From April 1, 2022 to March 31, 2023, 136 patient and family partners volunteered for 50 different engagements, ranging from surveys about digital health information to program development that would address the unique needs of young adults, like Lise, living with cancer.

"By working with our passionate group of partners on projects and committees, we ensure that lived experiences and perspectives are woven into our care," says Sarah Weller, director, Provincial Programs at BC Cancer. "It is important to check with patients and families to understand their experience of care. This is how BC Cancer can evaluate the work that we are doing."

Last year, BC Cancer collaborated with Royal Roads University and the Anew Research Collaborative to host an engagement session entitled Reshaping Young Adult Cancer Care. The group consisted of a near equal mix of more than 70 care providers and young adults with lived experience who came together to address the unique medical and psychosocial needs of young adults with cancer.

Key recommendations from the engagement session included: 

  • utilizing patient navigators skilled in guiding young adults through a cancer experience
  • developing comprehensive online access to resources and supports for young adults experiencing cancer
  • supporting program development, training, and research specific to the needs of young adults. BC Cancer researchers are exploring pilot initiatives to improve cancer care for young adults in B.C.

"I hope my years of experience as both a patient and a staff member in the health care system will bring positive changes and improvements for BC Cancer patients in the region," adds Lise. "Our health care system constantly changes; with that change brings never-ending opportunities to continue improving care and adapting to provide better services."

April 23 - 29, is Patient and Family Experience Week. If you would like to join the Patient and Family Partners network and get involved in an upcoming project, please visit:

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