Preserving Patient Privacy: The Crucial Role of Advocacy Groups in Canada

May 1, 2024

Since 2015, 14 cyberattacks have occurred against Canadian healthcare systems [Harish et al, 2023]. Nine of those attacks wanted ransoms to be paid and at least six of those attacks were believed to have compromised patients’ health records.

Patient privacy is a cornerstone of ethical healthcare practice, safeguarding individuals’ personal information and ensuring their autonomy and dignity are respected. In Canada, robust legal frameworks exist to preserve patient privacy rights, but as noted by the statistics listed above, challenges persist in an increasingly digitized and interconnected healthcare landscape.

Patient advocacy groups play a crucial role in addressing these challenges, advocating for legislative reforms, holding institutions accountable, and empowering patients to assert their privacy rights. Through their efforts, these organizations contribute to fostering a culture of respect for patient privacy and upholding the principles of ethical healthcare practice in Canada.

The Legal Landscape

Canada boasts comprehensive legislation to protect patient privacy, most notably the Personal Information Protection and Electronic Documents Act (PIPEDA) – the federal law that governs the collection, use, and disclosure of personal information by organizations – as well as provincial health privacy laws governing the collection, use, and disclosure of personal health information by public and private sector entities, including healthcare providers, insurers, and government agencies.

Under these regulations, healthcare providers must obtain consent before accessing and disclosing patient information, except in specific circumstances outlined by law. Additionally, stringent security measures are mandated to safeguard patient data against breaches or unauthorized access.

Privacy Laws by Province/Territory

British Columbia
New Brunswick
Newfoundland and Labrador
Northwest Territories
Nova Scotia

Tension Between Patient Privacy and Research Advancement

Patient data and healthcare records are a valuable commodity. As such, persons wanting to hack electronic health records are a concern, and with the proliferation of wearable health devices and telemedicine platforms, there are additional concerns about data security and privacy breaches. Trying to balance the need for privacy with the convenience of using smart technologies to collect data is extremely difficult. Furthermore, the multidisciplinary nature of healthcare systems, where multiple stakeholders and information-sharing networks communicate with each other, may increase the risk of privacy violations. Whether through negligence or malicious intent, jeopardizing patient privacy can weaken patients’ trust in the healthcare system.

With this said, there are clear benefits of collecting and sharing comprehensive health information for research, treatment, and public health purposes. Patient registries, for example, provide crucial data, which can help develop new therapies, inform healthcare providers about best practices, and identify emerging health threats. Addressing the tension between privacy and data utility requires transparency, ethical oversight, patient engagement, and privacy-enhancing technology, such as encryption and anonymization.

Role of Advocacy Groups

Patient advocacy groups are essential for striking this balance. First and foremost, they can educate patients, caregivers, healthcare professionals, and the public through resources and support about the importance of patient privacy in research and empower patients to take control over their health information. Second, they can advocate on behalf of patients for stronger privacy protections in research through legislation or working directly with research administrators. Through these, and other, methods, patient advocacy groups enable individuals to make informed decisions about the sharing of their personal health data and advocate for their privacy rights within healthcare settings.

Core Curriculum

Introduction to Patient Advocacy in Canada

This course will introduce students to the core concepts and skills needed to be a professional patient advocate in Canada.

Advanced Curriculum

These courses will provide students with advanced concepts and skills to be professional patient advocate in Canada. The three different themes will focus on three common themes that patient advocacy leaders in Canada generally concentrate on:

  1. management/leadership
  2. changing policy, and
  3. advancing research.

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