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Appl Clin Inform 2023; 14(03): 544-554
DOI: 10.1055/s-0043-1769924
Adolescent Privacy and the Electronic Health Record

Shifting into Action: from Data Segmentation to Equitable Interoperability for Adolescents (and Everyone Else)

Chethan Sarabu
1   Department of Pediatrics, Stanford University School of Medicine, Palo Alto, California, United States
,
Marianne Sharko
2   Department of Healthcare Policy & Research, Division of Health Informatics, Weill Cornell Medical College, New York, New York, United States
,
Carolyn Petersen
3   Department of Artificial Intelligence and Informatics, Mayo Clinic, Rochester, Minnesota, United States
,
Hannah Galvin
4   Department of Information Technology, Cambridge Health Alliance, Tufts University School of Medicine, Cambridge, Massachusetts, United States
› Author Affiliations FundingShift Board member organizations (the American Medical Association, the American Academy of Pediatrics, Integrating the Healthcare Enterprise, the Healthcare Information and Management Systems Society Electronic Health Records Association, Drummond Group, and the AARP) have all made financial contributions and/or donated services in kind to support Shift. These funds are administrated by the Cambridge Health Alliance, a nonprofit entity.
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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

Protection of Human and Animal Subjects

No human or animal subjects were involved in this work.


Supplementary Material



Publication History

Received: 17 January 2023

Accepted: 19 April 2023

Article published online:
19 July 2023

© 2023. Thieme. All rights reserved.

Georg Thieme Verlag KG
Rüdigerstraße 14, 70469 Stuttgart, Germany

 

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