On a Tuesday evening in Calgary four years ago, Robert Douglas’s doctor pointed to several spots on an X-ray of Douglas’s lungs and explained that he had cancer.
“I was in shock,” says Douglas.
The next morning, Douglas went to the Tom Baker Cancer Centre in Calgary for a CT scan and received a call back later that day urging him to go immediately to the Rockyview General Hospital for surgery.
The next week was a blur of tests, scans, ultrasounds and procedures — often while having to fast.
“By the time I started chemotherapy and had really sat down with my doctors, I’d lost almost 40 pounds, I hadn’t eaten much, I’d had fluids injected in me, I hadn’t slept, I’d had surgery, I was on opioids,” says Douglas. “You’re not necessarily at the highest cognitive level, and your short-term memory tends to become incredibly unreliable.”
A corporate lawyer who is accustomed to being able to count on his memory, Douglas considers himself lucky that his wife, an engineer and a “copious note-taker,” was able to attend his doctor’s appointments and keep track of the tidal wave of information coming their way.
But not everyone has a copious note-taker to rely on, and being inundated with important medical information at a vulnerable time can be overwhelming.
This very fact is what led Dr. J. Dean Ruether, a medical oncologist at the Tom Baker Cancer Centre, and Dr. Tom Hack, a researcher at the University of Manitoba, to look into ways to help.
In the early 2000s, and again in 2013, they held randomized control trials and evaluation studies that examined ways that certain patients could change and improve upon their cancer treatment participation. One such study looked at the impact and benefits of letting patients record their doctor consults. It found that patients who did record their consults were generally more present during their consult conversation, because they didn’t have to worry about remembering everything they were hearing. The majority of those same patients also claimed to have felt better prepared to make treatment decisions after the fact, and were even more likely to consider participating in clinical trials later on.
Recently, the results of Hack and Ruether’s research inspired the development of a brand new app that allows patients to record oncology consults. Called My Care Conversations and officially launched in late November 2018, the app is fully funded thanks to the support of Alberta Cancer Foundation donors and was developed by CancerControl Alberta and Alberta Health Services.
“I know first-hand from many patients how overwhelming it is to go into a cancer consult and hear so much information. You cannot remember anything after the words, ‘You have cancer,’” says Dr. Linda Watson, lead of person-centred care integration with CancerControl Alberta and the oncology nurse in charge of developing the app. “[This app] is such a patient- empowerment strategy.”
The app is still new, but Watson says it will soon become a key part of patient orientation programs. Its main recording feature offers options for electronic note-taking and the ability to pre-populate prompts for common questions a patient may want to ask. It also includes privacy initiatives explaining who the recordings can be shared with, a built-in reminder to tell the care provider a recording is being made, and tips on where you can record and how to best position the phone to get the best quality recording.
“Cancer is a different thing to everybody who has it,”says Douglas, who was part of the first round of user testing for the app. “Being able to get a better understanding of your disease, a better understanding of your treatment options … I think that’s very empowering to patients.”