Patient Voice Network

You can help us advance cancer patient interests by joining the growing CCAN pan-Canadian network of patient voice representatives.

Who are CCAN patient voice representatives?

A CCAN patent voice representative is an informed individual recruited by CCAN to speak on behalf of cancer patients in a wide variety of forums.  A patient voice representative is most often a cancer survivor, or a person who has intimately accompanied someone on their cancer journey.  In the interest of advancing patient interests, CCAN may also welcome a person who has first hand experience dealing with a cancer diagnosis to speak on behalf of patients across the cancer continuum.

What is expected of a patient voice representative?

• Lend an informed patient voice in support of efforts to see a more accountable and responsive cancer-system emerge
• Support coordinated efforts to represent the patient perspective
• Bring a unique patient viewpoint to discussions and initiatives that serve to address the changing pan-Canadian cancer control landscape
• Ensure the cancer system becomes more aware and responsive to the diverse needs of cancer patients and their families through effective dialogue
• Promote and articulate patient needs and priorities wherever possible

What are some of the key characteristics a patient voice representative should have?

• First-hand experience with (and understanding of) the cancer journey preferably from diagnosis through treatment and care.
• A good understanding of the committee/decision-making body on which the patient-voice is involved including its role in the broader cancer-system and the role envisioned.
• A clear understanding and appreciation of patient needs and priorities.
• An ability to acquire the information and adopt the skills needed to successfully negotiate important issues.
• A willingness to prepare for meetings ahead of time and read prepared materials, as well as an ability to absorb sometimes technical information.
• A general understanding of the cancer control community
• An overall understanding of patient issues and health care concerns that may impact cancer patient communities on a broader scale.

What are some of the preferred skills and abilities of a patient voice representative?

Ideally, patient voice representatives should possess:

• Strong communication skills with the confidence to fully participate to proactively cultivate or strengthen relationships with stakeholders.
• An ability to learn and manage intake of information; strong listening skills.
• An ability to adopt a broad perspective and, where applicable, to identify “where and when” to draw from or share personal experiences.
• An ability to focus and, where feasible, guide group discussion from a patient-voice perspective.

CCAN believes the pan-Canadian patient voice should be included in cancer-system planning, coordination and during policy-making efforts. Ultimately, our goal is to ensure that all patient voice representatives are engaged as full and equal participants and are involved at the earliest stage of any initiative. We ask all representatives to be prepared to actively participate and articulate the patient perspective, as well as report to the CCAN national office on the activity they were involved in, or the outcome of their participation.