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By Nahla Davies
Wed | Jul 26, 2023 | 11:03 AM PDT

With organizations and practices of all sizes across the healthcare industry adopting more advanced systems, privacy can no longer be an afterthought. Instead, it must be a cornerstone embedded from the beginning. 

To help make the shift, we will examine the core principles of privacy by design, a preemptive and integrated strategy for safeguarding patient data from the earliest stages of healthcare system development and process design.

We will decode the crucial principles behind this approach—from data minimization and user-centricity to transparency—and discuss the vital role of Privacy Impact Assessments in identifying potential privacy vulnerabilities. 

We will also underscore the significance of persistent privacy management and emphasize how healthcare organizations can fortify their data protection by embedding privacy into their infrastructure, culture, and operations.

Understanding the concept of privacy by design

Privacy by design is an approach to systems engineering that proactively embeds privacy into the design and operation of IT systems, networked infrastructures, and business practices. 

Developed in the late 1990s by Dr. Ann Cavoukian, the then Information and Privacy Commissioner of Ontario, Canada, the framework builds upon Fair Information Practices to create a proactive prevention model instead of remedial privacy protection. This anticipatory approach can significantly enhance data protection in healthcare, where sensitive patient data is constantly collected, stored, and used. 

Key principles of privacy by design

  1. Proactive and preventative: Privacy by design emphasizes a proactive stance, not a reactive one. It actively seeks and prevents any privacy-invasive events before they happen instead of dealing with them after they've already occurred.

  2. Privacy as a default setting: Privacy by design ensures that personal data is automatically protected in any system or business practice. No action is required on the part of the individual to protect their privacy—it's built into the system by default.

  3. Privacy embedded into design: Privacy is essential to the core functionality being delivered. It is embedded into the design and architecture of IT systems and business practices and, thus, is integral to the system and not an add-on.

  4. Full functionality: Privacy by design aims to accommodate legitimate interests and objectives in a win-win manner. It avoids unnecessary trade-offs and allows full functionality, including data security and privacy, to be achieved simultaneously.

  5. End-to-end life cycle protection: This principle means that data is securely retained, and end-of-life disposal is carried out in a manner that the data life cycle remains secure at every point.

  6. Visibility and transparency: A privacy-by-design approach assures stakeholders that whatever business practice or technology involved operates according to stated promises and objectives, subject to independent verification as needed.

  7. Respect for user privacy: Above all, privacy by design requires architects and operators to keep the interests of the individual uppermost by offering measures like strong privacy defaults, appropriate notices, and promoting user-friendly options.

The vital role of data minimization

Data minimization, a fundamental principle of privacy by design, advocates for the limited collection and retention of personal data, confining it strictly to what is essential and relevant for a specified purpose. This ensures proper compliance with any applicable privacy regulations and significantly mitigates the potential repercussions of a data breach or unauthorized access. 

Within healthcare, data minimization translates to gathering and storing only the bare minimum of health and personal data needed for diagnosis, care, and treatment. The extent of damage a potential breach can inflict can be considerably contained by actively reducing the quantity of data amassed.

According to the team at Weave, dental offices spend six hours verifying patient insurance information and data per week on average. But by reducing the amount of patient data that is collected into their system, practices can vastly accelerate the time it takes to verify and import patient data. This helps reinforce the argument that these principles aren't just theoretical constructs; rather, they actually have tangible, positive impacts on organizations when implemented correctly.

Emphasizing user-centric approaches

A user-centric approach in the context of privacy by design essentially refers to prioritizing the needs, expectations, and rights of the user, or in the case of healthcare, the patient. This approach entails the creation of systems that not only preserve patient privacy but are also intuitive and cater to the user's needs. 

For instance, privacy settings should be easy to locate and adjust according to the patient;s preferences. Similarly, patients should have easy access to comprehensive information about how their data is handled, stored, and protected.

Employing transparency in practice

Transparency forms the foundation and backbone of any successful data privacy strategy. It plays a pivotal role in establishing and maintaining the trust that's so important to have between healthcare providers and their patients. A transparent approach ensures that patients are well-informed about how their data is used, who has access to it, and how it is safeguarded. 

This can be facilitated through clear and easily understandable privacy policies, open and timely communication in the event of data breaches, and demonstrations of the implemented privacy protection measures. Healthcare providers can effectively alleviate privacy-related concerns, fostering an environment of trust and openness by prioritizing transparency in their practice.

The importance of privacy impact assessments (PIAs)

A Privacy Impact Assessment, or PIA, is a process that helps assist organizations in identifying and minimizing the potential privacy risks of new projects or policies. In the healthcare sector, a PIA could be used when implementing a new Electronic Health Record (EHR) system or when developing a new patient data-sharing policy. 

PIAs play a key role in the proactive stance of privacy by design by identifying potential privacy risks well before they become active problems that must be dealt with.

Persistent and ongoing privacy management

Adhering to privacy by design principles requires realizing that privacy management is not a static or one-time task but a continuous and dynamic process. 

As technology advances and shifts, so too do the potential privacy threats, necessitating a commitment to routine privacy audits. These audits enable healthcare organizations to assess their privacy measures regularly and make necessary adjustments to bolster defenses against new or evolving risks.

Additionally, staff training must be periodically updated to address these shifting landscapes and ensure that all staff and team members are well-versed in the latest privacy practices and principles. Importantly, privacy policies and procedures must be frequently reviewed and updated to reflect technological changes, regulations, and organizational objectives.

Adopting privacy by design in your organization

With patient and general healthcare data being highly sensitive, it becomes essential for organizations to embed privacy principles into their systems, processes, and cultures right from the earliest stages. 

The key principles that form the bedrock of this approach—such as data minimization, user-centric design, transparency, and privacy impact assessments—can all significantly aid in mitigating privacy risks, bolstering data protection, and fostering trust with patients.

Healthcare organizations must continue to strive for the delicate balance between technological advancements and maintaining the privacy and trust of patients. Through proactive privacy management, a clear understanding of privacy principles, and a persistent commitment to protecting patient data, organizations across the healthcare sector can better adapt to the rapidly evolving digital age.