Alberta Cancer Foundation

Speak Up, Speak Out: The Importance of Patient Advocacy

Photograph of patient advisor Brad Inkster by Cooper & O‘Hara.

Once a month at the Central Alberta Cancer Centre in Red Deer, a group of staff members including nurses, an occupational therapist, a dietitian, managers, and Darcie Flanders, the community oncology social worker, gather to discuss how they can improve patient care in the facility. Called Communities of Practice (CoP), the group looks at different ways in which patients can have better experiences.

Launched as a provincial program in 2013 (with help of oncology social worker and provincial program lead Tricia Hutchison) the CoP program has been operating in Red Deer since 2015. And it was in March 2018 when the Red Deer group first began searching for input on patient care from the patients themselves.

One of those patients is Brad Inkster, who considers himself an advocate for his fellow patients in his role as a patient advisor with the CoP. Inkster hopes that by sharing his story, the patient’s perspective will be better understood by those who are on the other side of cancer care. He is adamant that patients need to speak up.

“If you’re not your own personal advocate, you’re not going to get the help you need,” says Inkster.

In 2008, Inkster underwent treatment for kidney cancer. During that time, his doctor noticed a spot on his lung. After a few months of monitoring, Inkster was informed the spot wasn’t growing, and no further steps were taken.

But, in 2016, the spot had grown, and his doctor decided to do a biopsy. Days later, Inkster’s lung collapsed, and he was officially diagnosed with lung cancer. After it was discovered that the cancer had spread to the exterior of his lungs, Inkster was referred to an oncologist. He went two months without any word on when he would be able to see the doctor.

“The advocacy makes me want to fight harder.” – Brad Inkster

When he finally saw his oncologist, Inkster was told that his lung cancer was terminal. “I was rather shocked and mad that it went from, ‘We’ll just leave [the spot] alone and keep checking [it]’ to now ‘You’re done,’” says Inkster.

After discussions with a medical oncologist and radiation oncologist, a different treatment plan for Inkster — who was 58 years old and otherwise in good health — was created, including chemo and radiation. He’s now in his third round of chemo.

For Inkster, speaking up about his various concerns has been an important part of his journey. “It’s helped me push myself more,” he says. “The advocacy makes me want to fight harder.”

Patient feedback like Inkster’s has helped the CoP confirm areas where they can change strategies, particularly when it comes to communication. In some cases, feedback has also confirmed the veracity of provincially mandated changes already in the works, including examining the referral process. But the CoP is looking at other changes to patient communication, too, including creating different ways of dispersing information, such as running informative slides on TV screens throughout the facility.

The Central Alberta Cancer Centre has recently implemented another way in which patients can have an impact on the facility — the Patient Experience Committee. Organized by CancerControl Alberta, the committee is made up of patients and family members who have been treated there, as well as staff. The goal is to bring committee members on-site regularly so that staff members at the Central Alberta Cancer Centre can approach them to get feedback right away on proposed changes to the patient experience.

Naomi Hanna is one of the four patient advisors sitting on the newly formed committee, and she’s looking forward to bringing her perspective. “I would like future patients to understand that they have [a] voice. And that people will listen to them,” says Hanna.

5 Communication Tips for Patients

Do

Enlist a backup listener for important appointments. The My Care Conversation app, supported thanks to Alberta Cancer Foundation donors and available on iTunes, is a great way to record conversations with your cancer care team.

Don’t

Keep your questions to yourself.

Do

Stay connected to your family doctor throughout your treatment.

Don’t

Google-research your condition.

Do

Embrace psychosocial and wellness supports.