How to Comply with Children's Privacy Laws in Healthcare

Healthcare organizations must follow strict laws like HIPAA and COPPA to safeguard minors' personal and health information. These laws ensure that children's sensitive data is collected responsibly, shared minimally, and stored securely. Non-compliance can lead to fines, legal issues, and lasting reputational harm.

Here’s what you need to know:

• HIPAA: Protects health information, grants parents access to minors' medical records, and enforces data security measures.
• COPPA: Regulates how data from children under 13 is collected online, requiring parental consent and limiting unnecessary data collection.
• Upcoming Changes: COPPA 2.0 and KOSA propose stricter rules, including raising the age threshold and adding safety features for online platforms.

Key steps for compliance:

1. Create clear privacy policies tailored for pediatric care.
2. Obtain and verify parental consent for data collection.
3. Limit data collection to only what is necessary.
4. Encrypt sensitive data and enforce access controls.
5. Regularly audit systems for vulnerabilities and compliance gaps.

Using tools like Censinet RiskOps™ can simplify compliance by automating consent management, monitoring risks, and ensuring privacy protections align with regulations. Focusing on privacy safeguards builds trust with families while protecting young patients' futures.

Privacy Laws for Parents: What You Should Know About HIPAA

Key Children's Privacy Laws You Need to Know

Healthcare organizations must navigate federal regulations designed to protect the personal and medical data of children. Familiarity with these laws is critical for creating compliance strategies that safeguard minors while still delivering quality care.

Children's Online Privacy Protection Act (COPPA)

COPPA is the leading federal law that governs how websites, online platforms, and mobile apps collect personal data from children under 13 years old. Enforced by the Federal Trade Commission (FTC), this law requires strict compliance to protect young users.

Under COPPA, healthcare providers must secure verifiable parental consent before collecting any personal data from children under 13. This includes information such as names, addresses, contact details, and persistent identifiers like IP addresses or device IDs that could track a child’s online behavior.

The law also mandates that organizations create clear and detailed privacy policies. These policies must outline what data is collected, how it is used, and with whom it is shared, all in language that is easy for parents to understand.

COPPA stresses that data collection should be limited to what is absolutely necessary for providing services. Violations can carry hefty financial penalties, with fines imposed for each individual breach.

Health Insurance Portability and Accountability Act (HIPAA)

HIPAA provides broad protections for all patients' health information, including specific considerations for minors' medical data. This law ensures that healthcare organizations handle protected health information (PHI) responsibly, particularly in the context of pediatric care.

HIPAA grants parents and legal guardians significant rights over their children’s health records. They can access these records, make healthcare decisions, and control how providers use or share their child’s medical information.

The minimum necessary standard under HIPAA requires healthcare providers to limit the disclosure of PHI to the smallest amount needed for a specific purpose. This principle plays a vital role in reducing privacy risks, especially when managing sensitive pediatric information.

Additionally, HIPAA requires organizations to implement administrative, physical, and technical safeguards to prevent unauthorized access or misuse of PHI. While these protections apply to all patients, many providers take extra steps to secure children’s records due to their heightened sensitivity. In some cases, state laws go even further, granting minors specific privacy rights for services like mental health or reproductive care.

New Updates: COPPA 2.0 and KOSA

Proposed updates to COPPA and the introduction of the Kids Online Safety Act (KOSA) could bring expanded privacy protections for children.

COPPA 2.0 proposes raising the age threshold from 13 to 16 years old and broadening the definition of personal data to include biometric information, voice recordings, and geolocation data. These changes would require stricter parental consent protocols and more robust data management practices, particularly for healthcare providers using telehealth platforms, mobile apps, or wearable devices to monitor young patients.

The updated law also introduces stronger data deletion requirements, allowing parents and teens to request the removal of personal information easily. Healthcare providers will need to carefully balance these deletion rights with the necessity of retaining records for ongoing care.

The Kids Online Safety Act (KOSA), meanwhile, emphasizes a duty-of-care approach. If enacted, healthcare organizations offering online services to minors would need to implement features that prioritize safety. This could include default privacy settings for users under 17, restrictions on targeted advertising, and regular evaluations of how platform features affect young users’ mental health and development.

Keeping up with these evolving regulations is essential for healthcare organizations to ensure compliance while continuing to protect the privacy and well-being of their youngest patients.

How to Implement Compliance Measures in Your Healthcare Organization

Creating effective compliance measures in healthcare requires a well-structured approach that addresses governance, consent management, and security protocols. These steps are essential to protecting children's data while ensuring smooth operations.

Set Up Privacy Governance Frameworks

Start by appointing compliance officers who are well-versed in HIPAA and COPPA regulations. These officers will oversee privacy policies and work closely with clinical, IT, and legal teams to ensure alignment.

Develop pediatric privacy policies that clearly explain parental rights, data usage, and deletion processes. Use simple, age-appropriate language to make the policies accessible. For children under 13, full parental oversight is required, while teens may have varying rights depending on state laws.

Train all staff members on specific protocols for handling pediatric data. Focus on when and how to obtain verified parental consent, and enforce stricter protection standards for children's information. Standardize the consent process and streamline data collection practices to further enhance security.

Get Parental Consent and Minimize Data Collection

Implement a thorough parental consent verification process - going beyond simple checkboxes or signatures.

Create consent forms that are clear and transparent, specifying details like what data is being collected, why it’s needed, how long it will be retained, and how it will be used. Use straightforward language to prevent confusion.

Limit data collection to the essentials. Regularly review registrations and clinical records to eliminate unnecessary information. This not only simplifies compliance but also makes it easier to respond to parental requests for data access or deletion. Once governance and consent processes are in place, focus on strengthening data security.

Strengthen Data Security Practices

Pediatric data requires more rigorous security measures than standard HIPAA compliance.

Encrypt pediatric electronic protected health information (ePHI) both at rest and during transmission, following HIPAA guidelines and using secure transmission methods ^[1][2][4].

Implement role-based access controls to ensure that only authorized personnel can view pediatric records ^[1][4].

Adopt a "Privacy by Design" approach by embedding safeguards like anonymization, data minimization, and age-appropriate privacy defaults. Systems should automatically apply stricter privacy settings for patients under 18 ^[3].

Conduct regular risk assessments to identify vulnerabilities in telehealth platforms, mobile apps, and third-party services that handle pediatric data ^[4].

Finally, deploy monitoring systems with detailed audit trails to quickly detect breaches and demonstrate compliance with regulations. These measures are crucial for maintaining trust and protecting sensitive information.

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How to Align HIPAA and COPPA Compliance

Healthcare providers serving children under 13 face a unique challenge: they must comply with both HIPAA and COPPA at the same time. This is especially relevant for digital health platforms, telehealth services, and mobile health apps that handle both Protected Health Information (PHI) and personal data from children ^[5].

These two laws overlap but focus on different aspects. HIPAA is all about safeguarding health information, while COPPA regulates the collection of personal data from children under 13. To avoid penalties and ensure young patients' data is secure, organizations must meet both sets of standards. This is particularly critical for platforms managing both types of sensitive data.

Align Policies and Procedures

The first step is to create unified policies that reflect the shared principles of both laws, particularly around data minimization. HIPAA requires the "minimum necessary" use of PHI, and COPPA limits data collection to what’s absolutely essential ^[5][6].

Develop privacy policies that clearly outline how children’s personal information is collected, used, and shared, while adhering to HIPAA's strict requirements for PHI protection ^[5][7]. These policies should be written in plain, easy-to-understand language that parents can follow.

You’ll also need systems in place to verify parental consent for COPPA and secure HIPAA-required authorizations for PHI. This includes verifying parental identity and capturing dual consent for both laws.

Data usage policies should align with both frameworks. COPPA bans requiring children to provide unnecessary personal information to participate in an online activity ^[5]. Similarly, HIPAA mandates that PHI use be limited to what’s necessary for treatment, payment, or operations. Policies should reflect these combined restrictions to ensure compliance across the board.

Keep Documentation and Audit Trails

After establishing unified policies, thorough record-keeping becomes essential. Maintain detailed documentation of consent processes, data handling procedures, and access controls for both PHI and children’s personal data. Audit trails should record when and how parental consent was obtained, what data was collected, and how it’s being used.

Access control is especially important when dealing with pediatric data. Set up policies to limit internal access to PHI based on specific job roles ^[6]. Audit trails should clearly show who accessed what data, when, and why.

Track and document parental requests to review, delete, or restrict children’s personal data (COPPA) and PHI (HIPAA) ^[5]. Systems should log these requests and how they were resolved.

Regular audits are critical. Conduct compliance audits that evaluate both HIPAA and COPPA requirements simultaneously. Use these audits to identify gaps or conflicts, and document the steps taken to address them. This demonstrates an ongoing commitment to compliance.

Finally, document all security measures, including encryption methods, storage protocols, and data transmission practices. Both laws require strong data security, so keeping detailed records of these safeguards is essential ^[5][8].

Use Technology for Compliance and Risk Management

With governance and consent measures in place, technology can simplify compliance and risk management. As the number of digital touchpoints grows, managing compliance manually becomes increasingly challenging.

A well-designed technology stack transforms compliance efforts from being reactive to proactive. Instead of scrambling to respond to audits or breaches, automated systems continuously monitor, evaluate, and enhance privacy measures. This proactive stance is especially effective when paired with advanced risk assessment platforms.

Use Risk Assessment Platforms Like Censinet RiskOps™

Healthcare organizations face the unique challenge of juggling multiple compliance requirements, such as HIPAA and COPPA. Platforms like Censinet RiskOps™ are specifically designed to help healthcare delivery organizations manage risks involving patient data, PHI, clinical applications, and medical devices.

One standout feature of Censinet RiskOps™ is its cybersecurity benchmarking, which allows organizations to measure their compliance against industry standards, particularly for safeguarding children's privacy. This is crucial for ensuring that data security practices meet the stricter requirements for protecting children under 13.

The platform also features Censinet AITM, which speeds up risk assessments by automating security questionnaires and summarizing vendor documentation. For organizations working with multiple third-party vendors managing children's data, this automation saves time while ensuring thorough oversight of privacy risks.

Additionally, the platform’s collaborative risk network serves as a centralized hub where governance, risk, and compliance teams can coordinate their efforts. Risk assessment findings and related tasks are automatically routed to the appropriate stakeholders, including AI governance committees overseeing systems that may impact children's data.

Automate Consent and Monitoring Processes

Automating consent and monitoring processes can significantly reduce the manual workload while improving compliance accuracy.

• Parental consent automation manages the entire process of capturing digital signatures, verifying parental identities, and maintaining timestamped records for COPPA and HIPAA compliance. This eliminates the hassle of tracking consent manually.
• Real-time monitoring tools keep an eye on data collection activities, flagging potential violations before they escalate into compliance issues. For example, these systems can detect when an application tries to collect unnecessary personal information from children, triggering immediate alerts for privacy teams.
• Policy update automation ensures that privacy notices and consent forms remain current with regulatory changes. When new rules emerge, updates are pushed to all relevant platforms, and parents are notified of any significant changes in data handling practices.
• Automated retention and deletion processes handle parental data deletion requests efficiently. These systems locate all instances of a child’s data across various databases and applications, execute deletions, and maintain audit trails to ensure compliance.

Centralize Governance and Collaboration

Centralizing governance efforts can further enhance compliance and team coordination.

Unified dashboards provide a real-time view of compliance status across all systems handling children’s data. These dashboards offer insights into consent rates, data collection activities, and overall compliance trends.

Centralized platforms also enable cross-functional collaboration between IT security, legal, compliance, and clinical teams. When privacy incidents occur, automated workflows ensure that the right stakeholders are alerted immediately to coordinate an effective response.

Leadership can benefit from risk visualization tools, which present a clear picture of the organization’s privacy posture. These tools highlight emerging risks, track remediation efforts, and help allocate resources more effectively.

Integration with existing systems like electronic health records, patient portals, and clinical applications creates a comprehensive view of how children’s data flows through the organization. This visibility can reveal areas where additional protections are necessary.

Conclusion: Build a Privacy-First Culture

Meeting children's privacy laws in healthcare goes far beyond simply following regulations - it's about making privacy a core part of daily operations. By prioritizing privacy, healthcare organizations not only safeguard young patients but also foster trust with families and the broader community.

A strong foundation begins with trust and a structured, multi-layered approach. This means implementing governance frameworks, clear parental consent processes, and limiting data collection to only what's necessary. These steps are essential for maintaining compliance over the long term.

Technology is also a key ally in these efforts. Tools like Censinet RiskOps™ help organizations manage risks tied to children's data in areas like clinical applications, medical devices, and vendor relationships. Its features, such as cybersecurity benchmarking and automated workflows, ensure that privacy protections align with industry standards and that issues are addressed swiftly.

Beyond governance and technology, patient care and safety must always remain the top priority. For privacy professionals, this means finding the delicate balance between sharing patient data to improve outcomes and safeguarding sensitive information - especially when it involves children.

With new laws like COPPA 2.0 and KOSA on the horizon, the regulatory landscape is constantly shifting. Healthcare organizations that establish strong privacy practices today will be better equipped to adapt to these changes without scrambling to meet new requirements.

By embedding privacy into every level of operations, healthcare providers can create a culture where privacy is second nature. This not only ensures compliance but also strengthens their role as a trusted partner in the community, allowing them to deliver care with confidence.

Investing in privacy compliance isn’t just about regulations - it’s about earning and maintaining trust.

FAQs

How can healthcare organizations stay compliant with evolving children's privacy laws like COPPA 2.0 and KOSA?

Healthcare organizations must stay on top of children's privacy laws like COPPA 2.0 and KOSA to remain compliant. This means actively tracking legislative updates, understanding amendments, noting effective dates, and following guidance from regulatory bodies such as the FTC.

To keep up with these evolving requirements, it's crucial to regularly review and update compliance policies. Conducting staff training sessions and consulting legal experts can provide additional support in navigating these regulations. Relying on trusted industry sources and privacy-focused organizations for updates is another effective way to stay ahead and maintain compliance.

What are the best practices for verifying parental consent under HIPAA and COPPA?

Healthcare organizations must take specific steps to ensure compliance with HIPAA and COPPA when verifying parental consent. This includes methods like validating government-issued IDs, utilizing secure digital platforms with built-in audit trails, and leveraging advanced identity verification technologies such as biometric authentication or document validation.

Equally important is offering clear, transparent notices about data collection practices. Parents should be fully informed and required to provide explicit consent before any action is taken. These measures not only protect children's privacy but also ensure adherence to regulatory standards.

How can using a platform like Censinet RiskOps™ help healthcare organizations comply with children's privacy laws?

Using a platform like Censinet RiskOps™ enables healthcare organizations to navigate children's privacy laws more effectively by streamlining and automating risk management processes. It ensures that third-party vendors and partners adhere to strict privacy standards, including those established by COPPA, through thorough risk assessments and ongoing compliance checks.

With advanced tools, the platform delivers real-time insights into potential risks, helping organizations protect sensitive pediatric health information and minimize the chances of data breaches. This forward-thinking approach not only secures patient data but also helps healthcare providers meet legal and regulatory obligations with greater assurance.

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