Abstract
Background Technological improvements and, subsequently, the federal 21st Century Cures Act
have resulted in increased access to and interoperability of electronic protected
health information (ePHI). These not only have many benefits, but also have created
unique challenges for privacy and confidentiality for adolescent patients. The inability
to granularly protect sensitive data and a lack of standards have resulted in limited
confidentiality protection and inequitable access to health information.
Objectives This study aimed to understand the challenges to safe, equitable access, and interoperability
of ePHI for adolescents and to identify strategies that have been developed, ongoing
needs, and work in progress.
Methods Shift, a national task force formalized in 2020, is a group of more than 200 expert
stakeholder members working to improve functionality to standardize efforts to granularly
identify and protect sensitive ePHI to promote equitable interoperability.
Results Shift has created high-priority clinical use cases and organized challenges into
the areas of Standards and Terminology; Usability and Implementation; and Ethics,
Legal, and Policy.
Conclusion Current technical standards and value sets of terminology for sensitive data have
been immature and inconsistent. Shift, a national diverse working group of stakeholders,
is addressing challenges inherent in the protection of privacy and confidentiality
for adolescent patients. The diversity of expertise and perspectives has been essential
to identify and address these challenges.
Keywords
interoperability - privacy - confidentiality - standards - implementation - data segmentation
- DS4P - adolescent
