Chapter 2 – Section 4
Data and ethics cannot be uncoupled in pediatrics. The unique blend of stakeholders in children’s care systems, their complex developmental stages, and the very nature of their technology use requires intentional strategies to ensure that their rights and decisions are appropriately considered.
This section will give you insights, recommendations and other considerations to help guide you through these complexities.
State-by-state variability in adolescent privacy laws
This article breaks down how different U.S. states handle teens’ privacy rights in healthcare, especially when it comes to accessing confidential services without needing parental permission. The piece dives into how these rules vary widely, which can create real barriers for teens needing discreet care, and discusses what these differences mean for healthcare providers and policy changes aimed at better supporting adolescent privacy.
- Tiered access systems: Design systems that provide different levels of access based on the patient’s age and maturity, giving caregivers oversight when needed but offering adolescents control over their data and health management.
- Dynamic consent: Enable dynamic consent models that evolve over time, allowing patients to gradually take ownership of their health data while still ensuring caregivers have visibility into critical areas of care.
- Data encryption: Encrypt all data in transit and at rest to protect sensitive information from unauthorized access.
- Secure authentication: Use multi-factor authentication (MFA) and role-based access control (RBAC) to restrict access to authorized users only.
- Data minimization: Collect and store only the necessary data for patient care, reducing the risk of breaches by limiting exposure.
- Equitable interoperability: Implement systems that allow data to be shared securely and appropriately across platforms. Solutions like SHIFT can help create inclusive data-sharing frameworks.
- Lifecycle data management: Prioritize security while allowing for the gradual transition of access to the patient. Account for data portability as children age out of pediatric care.
- Quality frameworks: Implement a quality framework that prioritizes data accuracy, completeness, and contextual validity throughout the lifecycle of the DHT. This framework should guide data collection, storage, and analysis.
- HL7 FHIR standards: Follow FHIR standards to ensure that data flows seamlessly across systems, enabling more coordinated, timely, and personalized care for children.
- Clear communication: Provide simple, child-friendly explanations of how data is being used, and create caregiver resources that offer detailed transparency on data policies.
- Ethical data practices: Ensure that data is used solely for the intended purpose of improving patient care, and avoid practices that may compromise patient trust or privacy.
- Data-sharing agreements: Develop easy-to-understand agreements that outline how information is shared with schools, clinicians, or researchers, ensuring that patients and caregivers remain fully informed.
Continuous improvement and maintenance is an ethical imperative
Key takeaways and calls to action
Children and their care systems are fundamentally different from adults, influencing how DHTs can and should be developed. Factors such as physical and cognitive development, relationships with caregivers and community systems, access to technologies, and specific health needs must inform the design and implementation of pediatric DHTs.
To truly improve outcomes and transform care, it is essential to adopt a human-centered development approach that places pediatric patients, caregivers, and clinicians at the forefront of the product development process.
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Embed clinical SMEs into your product teams to guide evidence-based decisions and ensure the technology addresses real-world clinical needs. -
Centralize the pediatric care system by engaging all stakeholders—children, caregivers, and clinicians—from the outset and establish ongoing feedback mechanisms to refine the product based on their insights and experiences.
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Prioritize data privacy, quality, and ethical considerations by implementing robust security measures and ensuring that children’s rights are upheld throughout the technology’s lifecycle.
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Design DHTs that are flexible and can adapt to various healthcare settings, caregiving and consent dynamics, and individual needs of the user.
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Continuous evaluation: Implement a framework for ongoing evaluation and improvement based on user feedback and emerging best practices, ensuring that the technology evolves in response to changing needs.
