Let’s unwind the red tape around Canadian cancer data
This letter was originally published as part of a series of Open Letters from Canadian leaders in Healthcare. To see the complete series please click here.
When thinking about the tools used to treat cancer, do you picture radiation machines, or maybe chemotherapy dosages? What about data?
Increasingly, medical data in the form of pathology reports, blood work, X-rays, MRIs, PET scans, reports on the site, size and kind of tumour, the stage and progression of disease and surveys on a patient’s physical and emotional symptoms are an essential element of effective treatment.
Data can allow clinicians to build reliable evidence of the value of one treatment over another and help system administrators make the decisions that can shape better care for patients.
Unfortunately, leveraging this data as a powerful tool is hindered by a lack of openness to sharing data and growing restrictions due to privacy concerns.
This, and the reality that health data sources in Canada are not well-linked, particularly at the national level, has created a kind of paralysis around patient data that is crippling the ability to monitor and improve Canada’s cancer system.
What is lost is the potential to see trends in disease, to see patterns within treatment data, and to better understand the patient experience.
When I think about the future of the Canadian cancer system, I think about the urgent need to improve the flow of data.
As the organization responsible for tracking progress in meeting the goals of the Canadian Strategy for Cancer Control, one of the Partnership’s core functions is to monitor and report on the cancer system’s performance.
We do this by working with partners to identify the key indicators that illustrate whether, for example, treatment guidelines are being followed or patients are receiving equitable care. We then request the necessary, anonymized data from provinces and territories, conduct the analysis and share the results.
Since the Partnership began reporting on cancer system performance nearly 10 years ago, we’ve seen several examples of how shining a spotlight on system data can lead to improvements, most notably more consistent pathology reporting leading to more accurate assessment of a cancer’s stage and better treatment plans for colon cancer patients.
The Partnership has worked closely with provincial and territorial data holders to identify ways to more easily share data and we are currently funding an initiative to improve data collection and the capacity of provinces to analyze the data.
Data can tell a patient’s story: when they were screened, how long they waited for a diagnosis, how they responded to treatment, even how they experienced that treatment.
Combined with data from hundreds of thousands of cancer patients, a picture of Canada’s cancer system emerges, identifying gaps and challenges and highlighting areas where change is needed.
But because these data are not well-linked, and because access is frequently hampered by privacy policies or legislation, or sometimes even turf issues, these data are not working as hard as they could.
Instead of balancing patient concerns with system needs, privacy legislation seems to be left largely to individual interpretation, creating disparate impressions of what can be shared and used and what cannot.
When a pain medication is delisted, for example, it’s difficult to get a sense of how cancer patients and outcomes are impacted. To know, different data sources would need to be put together to see how widely the drug is used or what symptoms and side-effects are being reported in its absence.
Examples like Population Data BC offer a way forward. The similar “CD Link,” an initiative of the Ontario Institute for Cancer Research and the Cancer Care Ontario Health Services Research Program, has successfully linked Ontario’s cancer registry database with other data sources using a single, comprehensive Data Use Agreement.
While links within provincial borders are a step in the right direction, greater linkages are needed between provinces and at the national level in order to build the numbers needed for robust research.
Patients and providers also need to be part of the conversation, to better understand how health data are accessed and used, and what impact better data access and linkages can have on cancer prevention, screening, diagnosis and treatment.
Maintaining a patient’s trust that their data are treated with the utmost care and respect is the top priority. It’s important for patients and crucial for the system – especially since having access to data can improve system sustainability by augmenting our understanding of how best to invest in other prevention and treatment tools.
Access to medical data is an issue for the health system broadly but since Canada has a long history of collecting information through its cancer registries, this is a place we can start. Patients offer their data expecting it to be used – many wish to see the data generated by their own experience used to reduce the burden of cancer in others. If we are to achieve the goals set out in the Canadian Strategy for Cancer Control, we must find ways to live up to that expectation together.
About the AuthorShelly Jamieson is CEO of Canadian Partnership Against Caner
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