The Alberta Cancer Foundation’s new Patient Partnership Strategy asks patients what’s most important to research in head and neck cancer. It can be difficult for patients to contribute to the conversation with respect to what needs to get researched, and as a result, research often focuses on the priorities of other stakeholders. “It’s what we call a mismatch in priorities,” says Leah Lechelt, who led the patient partnership project at the Alberta Cancer Foundation.
In its first collaboration, the Patient Partnership Strategy sought the input of 900 head and neck cancer patients, some diagnosed up to 35 years ago. Head and neck cancer was chosen because it has a high mortality rate (40 to 50 per cent) and many patients suffer life-long consequences of treatment, including permanent damage to their tongue, jaw, throat or even the loss of an eye, nose or ear. “There is much potential to conduct research into reducing the effects of treatment,” she says.
In June 2016, an anonymous survey was sent to head and neck cancer patients, family members, caregivers and clinicians asking them, in their own words, what they believed should be answered by new research.
From a list of 800 issues, the group came up with 10 priorities, which included questions about rehabilitation and better knowledge about early signs and symptoms.
“Any small things we can do to make things a little bit easier for the complex nature of head and neck cancer is so important.”
— Kimberly Flowers, patient advisor
The number one priority for patients was not surprising. Respondents wanted to know what the best overall treatment combination or regimen (surgery, radiation, chemotherapy, immunotherapy) and dose/ schedule was for various head and neck cancers to achieve a good prognosis while reducing undesirable treatment effects.
This year, the Foundation issued a research call in Alberta focusing on the priorities identified by patients and clinicians. Patients will help evaluate the proposals along with the other review panel members.
“This is the chance for patients to be there right at the beginning to say, ‘Let’s make sure we focus on research questions that are most critical to us,’” Lechelt says.
Patient Kimberly Flowers participated in the strategy at a difficult time during a very lengthy recovery from stage III squamous cell carcinoma of the tongue cancer. “Being involved in these projects gave me a sense of purpose. It gave me a sense of achievement. It actually supported my recovery,” she says.
“I have direct input into a treatment that I may need, down the road, but certainly it’s also improving the treatment for patients who are coming up after us,” Flowers says. “Any small things we can do to make things a little bit easier for the complex nature of head and neck cancer is so important.”
Roxana Anderson doesn’t recall ever being asked what mattered most to her as a patient when she was diagnosed 30 years ago with cancer of the mucous producing glands of the eyelid. By the time her cancer was accurately diagnosed, the cancer had spread to her eye, which had to be removed. Anderson found involvement in the Patient Partnership Strategy very empowering.
“The patient is the only one who really knows what their whole journey was, from symptoms to diagnosis to treatment to lifelong problems that you might have or psychological issues that might come up,” she says. “There is a lot of wisdom with patients.”