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uhn foundation
supporting people with breast cancer from diagnosis to long-term surveillance
4 minute read
leading the way for patient advocacy and support, breast cancer canada developed an online progress tracker to track the patient health journey where the data generated has helped inform policy, care and drug therapy access.
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the reality is that breast cancer is a complex disease with long-term health effects like heart disease, scarring from the radiation treatment, difficulty healing from broken bones or fractures and mobility challenges from the removal of nodes under the arms. as well, more younger women are being diagnosed, mammograms are being done earlier, and while death rates are declining thanks to improved screening and treatments, the alarming fact remains: one in eight women in canada will have breast cancer in their lifetime.
“a lot of breast cancer patients don’t understand the complicated details of breast cancer. there’s more than 50 different types of breast cancer, and they’re categorized into subtypes,” says kimberly carson, ceo of breast cancer canada, who leads the charity in advancing breast cancer research, raising awareness and advocating for equitable healthcare policies across the country.
recognizing the care gap after surviving breast cancer
further, she points out that people may not realize that the healthcare system supports patients straight through until year five, when, if they’re in remission, they’re considered cancer-free. “from there, it’s like, ‘ok, you’re good, now we don’t need to support you.’ but there are long-term effects that people live with after breast cancer diagnosis and treatment.”
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leading the way for patient advocacy and support, breast cancer canada developed an online progress tracker in 2023 to track the patient health journey, where the data generated has helped inform policy, care and drug therapy access. the organization recently launched a new version of progress tracker designed with ai and supported by google health to be easier to use, inform and help people and their families who have a breast cancer diagnosis. it serves as a national registry to capture real-world experiences—patient-reported outcomes (pros)—through questionnaires completed four times per year.
the free registry follows participants for 10 years, from diagnosis through treatment and long-term surveillance.
harnessing ai technology for better data and self-reporting
“using the ai, we can improve the reliability and usability of the self-reporting health data. i think we can streamline that data collection much more easily. you know it’s accurate, and it’s a self-referred program where patients can read the consent form and then sign up for themselves. it’s something really easy to get involved in and something that is going to have a huge impact across the country,” carson says, noting that feedback on the new system has been positive and women value the chance to document their experiences to help move research and treatment forward for others.
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breast cancer canada
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she explains the potential of collected data to show the financial toxicity of breast cancer, with some medications, treatments and prosthetics not covered through insurance, and the emotional strain of going through breast cancer and worry over recurrence. what if people dip into their savings and it affects retirement planning? or what if poor health means they can’t return to work?
as well, canada has a breast cancer registry that shows the incidence in canada and death (one in 36 women is expected to die of the disease), but there’s no tracking of breast cancer recurrence. the tracker will fill this knowledge gap and identify the long-term challenges of breast cancer to influence health policy and care.
unlike traditional data sources that focus on clinical outcomes, the tracker looks at the patient perspective by documenting symptoms, side effects, quality of life and lived experience over time. people diagnosed at any stage and at any point in their journey are eligible to participate, creating a diverse and representative dataset.
“we know that there’s all of these long-term issues that people deal with, be they large or small, so how do we track that in a meaningful way? and what we’re also looking at with progress tracker is the difference between someone who’s living in an urban centre compared to someone rural. so again, very different experiences.”
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making sense of complex pathology reports
the other advantage of the new tracker is that people can better understand the unique pathology of their cancer. participants upload their pathology report, which is often very detailed and complex, and the software will extract and structure it to fill in some of the questionnaire responses and guide participants through the questionnaire with appropriate prompts, says alex topitsch, the charity’s chief technology officer.
“we’re looking at people who have gone through traumatic experiences and we want to make sure that they have the best experience answering these questions, entering data that’s going to be meaningful data going to be used to conduct policy change in this country, to conduct new drugs being regulated in this country. we want people in the best frame of minds while they’re running through this data to give those answers,” he says of the nuances of ai technology and what it offers.
“when we read the pathology report, we’re using our ai to get a sense of where they are and what they’ve gone through,” he adds, noting that ai can even identify when a participant may need a break and suggest completing the exercise at another time.
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“using ai can really alleviate a lot of stress in these questions, a lot of frustration and help them through a questionnaire that might take a half-hour, and they feel like it’s only been five minutes.”
carson is impressed with the early uptake of the new tracker, noting that the data is already showing some of the long-term effects of breast cancer and where interventions within the medical system and policy changes are needed. “when we talk to patients about participating, we’re explaining that you’re basically just telling your breast cancer story in a measured way that will help the future,” she says.
“it’s an exciting intersection, i think, between technology and healthcare and research and being able to use that data to help patients.”
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