What is a patient advisor?
“Patient advisors are looking at the cancer care system through the eyes of the cancer patient. We have insights […] that the professionals do not have.”
– Raina, Patient Advisor, CancerCare Manitoba
Sometimes it can be difficult to predict friction points in a system as complex as cancer care. The patient advisor program represents a partnership between cancer survivors and CancerCare Manitoba dedicated to improving the cancer experience.
Patient advisors provide feedback on programs and policies at CancerCare Manitoba. They are past and current patients or their loved ones. They use insights from their own cancer experiences to provide valuable input on how to improve the cancer experience.
The work that patient advisors perform varies with some examples including:
01.
Review and Test
Patient advisors may be invited to review new literature or other new resources, such as new software, and then provide feedback to ensure it enhances the experience of receiving care.
02.
Provide Constructive Criticism
Patient advisors may be invited provide feedback on parts of their own journey that were frustrating, disappointing, or could have gone more smoothly, identifying what changes would better accommodate patients as people.
03.
Participate
Patient advisors may also be invited to participate in fundraising and other volunteer efforts.
Why people choose to become patient advisors
People choose to become patient advisors for lots of different reasons, but wanting to use their own experiences with cancer care to improve the cancer journey for future patients is a very common one.
Benefits of being a patient advisor include:
Helping Others
Only people who have experienced cancer treatment can view policies and processes through the lens of a cancer patient, so patient advisors offer a perspective that is essential to improving the cancer journey that most care providers do not have.
Giving Back
Some patient advisors value the opportunity to give back to an organization that helped them through one of the most challenging times in their lives.
Self-care and Closure
Some describe being a patient advisor as a deeply personal form of self-care. It can also help some bring closure, and move past their diagnosis and treatment.
Challenges of the patient advisor program
Change takes time
As with any organization, change takes time. It can be frustrating for patient advisors to watch how slowly change happens. Additionally, given how big the organization is and the nature of some projects, patient advisors do not always get to see the end results of what they work on.
Volunteer based
Most patient advisor projects are all volunteer based, so advisors are not compensated for their time. This means people must take time away from paid work and family to participate, which limits who can participate and excludes certain voices from patient advisor initiatives.
Location
For advisors who live in rural or remote areas, distance (and travel time) can also be a barrier to participation. Virtual options can help, but there is an element of connection lost when activities are done over a screen rather than in-person.
Emotional toll
Patient advisor activities can also take a big emotional toll. It is important for patient advisors to be aware of when things are too difficult or what topics are too raw and set boundaries so that they can stay involved in the program in a healthy way.
Advice to people considering becoming a patient advisor
If you are interested in participating in work as a patient advisor with CCMB to improve the cancer experience in Manitoba:
You can also access more information about the patient advisor program on the:
This content was made possible through generous support from the CancerCare Manitoba Foundation.
The layout for this webpage was informed by the CancerMaps project for creating high-quality online content for those living with cancer.
