Canadians have a powerful resource at their fingertips that will transform how we screen, diagnose, treat, and provide support for those of us touched by cancer: our health data. Yet, accessing this resource is hindered by misconceptions about how and why health data can (and should) be used.
The data collected by the health system tells a cancer patient's story: when they were screened, how long they had to wait to receive their diagnosis, the treatment received and their response to it, and even their experience with care before and after treatment. By combining the data from hundreds of thousands of cancer patients, we can get a picture of Canada's cancer system that can be used to identify gaps and challenges, highlighting areas where change is needed, and where quality improvement initiatives can be targeted.
At the Canadian Partnership Against Cancer, we are working with partners to change the landscape of cancer within this country and I am proud of the work we do at the forefront of maximizing the use and impact of data through collection and linkage. But it is challenging to be so close to rich, useful data that has the potential to close critical care gaps, yet not be able to access it due to increasing restrictions.
We recognize that accessibility to, and use of, healthcare data is a complex issue and has been repeatedly debated over concerns pertaining to security and privacy laws. But much of this discussion is based on fundamental misunderstandings about health data sharing. I feel that it's important to clarify these myths, so that we can get Canadians and policy makers comfortable with sharing their data, ultimately improving the cancer experience in Canada.
What are the misconceptions of health care data sharing?
1. "Data sharing is an invasion of my privacy"
When health data is looked at for the purpose of studying and improving our health care system, data is never looked at the individual patient level. In fact, that type of data does not provide the insights needed to make system improvements. Health analysts look at aggregate data - in other words, combined data from hundreds of thousands of patients. This allows us to identify trends, patterns and achieve a better understanding of the cancer experience.
2. "If my medical data becomes more sharable, anyone can access it"
Privacy is always a priority, and when we talk about data linkages, it's about accessing health data in controlled environments. It's not accessible to just anyone and certainly not to everyone. We recognize the importance of balancing patient privacy with system needs. Top priority is given for medical data to be treated with the utmost care and respect.
3. "Data linkage won't help cancer patients"
I see data linkage as being the biggest game changer in terms of the future of the Canadian cancer system. We can track patterns of where, when, how and why people are receiving care. This information helps to identify trends and gaps, and allows delivery of the right service at the right time, more efficiently. This is crucial, as it directly impacts the health of all Canadians.
Data linkage is also key to population cancer research. In fact, more than 95 per cent of the 300,000 Canadians who have enrolled in the Canadian Partnership for Tomorrow Project have agreed not only to providing health and lifestyle information, but also to allowing data linkage to continuously enrich the information that could be used in cancer and chronic disease research.
4. "My health data is already being used to the best of its ability"
This is probably the most common misconception I come across when discussing data sharing with individuals. Patients assume that their information is freely shared amongst their healthcare team, translating to the best possible care. Unfortunately, this is not the case.
People are shocked when they discover that their medical data isn't shared due to privacy policies or legislation and sometimes even 'turf' issues between health networks. We need to be talking to each other. I think we can all agree that Canadians' data can and should be working harder.
We've all been touched by cancer - whether directly or indirectly - and we all have the power to help improve the cancer experience by supporting access to health data to make real improvements.
Better health data sharing is a conversation that needs to take place across Canada. Let's work together to leverage this untapped resource and look at the bigger picture of cancer.
Find out more about what the Partnership is doing to improve cancer outcomes through data linkage at www.partnershipagainstcancer.ca.
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