Creating a Guardrail System to Ensure Appropriate Activation of Adolescent Portal Accounts

Abstract

The parent of an adolescent patient noticed an upcoming appointment in the patient's portal account that should have remained confidential to the parent. As it turned out, this parent was directly accessing their child's adolescent patient portal account instead of using a proxy account. After investigation of this case, it was found that the adolescent account had been activated with the parent's demographic (i.e., phone/email) information. This case illustrates the challenges of using adult-centric electronic health record (EHR) systems and how our institution addressed the problem of incorrect portal account activations.

Confidentiality is fundamental to providing healthcare to adolescents. To comply with the 21st Century Cures Act's information blocking rules, confidential information must be released to adolescent patients when appropriate while also remaining confidential from their guardians. While complying with this national standard, systems of care must also account for interstate variability in which services allow for confidential adolescent consent. Unfortunately, there are high rates of guardian access to adolescent portal accounts which may lead to unintended disclosure of confidential information. Therefore, measures must be taken to minimize the risk of inadvertent confidentiality breaches via adolescent patient portals.

Our institution implemented a guardrail system that checks the adolescent patient's contact information against the contact information of their parent/guardian/guarantor. This guardrail reduced the rate of account activation errors after implementation. However, the guardrail can be bypassed when demographic fields are missing. Thus, ongoing efforts to create pediatric-appropriate demographic fields, clearly distinguishing patient from proxy, in the EHR and workflows for registration of proxy accounts in the patient portal are needed.

Keywords

adolescent confidentiality - patient portal - demographics - electronic health records

Protection of Human and Animal Subjects

Not applicable. The case report is presented as part of a broader quality improvement initiative to ensure adolescent confidentiality in the patient portal which was reviewed and exempted by the institutional review board.

Authors' Contributions

All authors contributed to the manuscript conception and design. The draft of the manuscript was written by J.X. and J.C. and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Publikationsverlauf

Eingereicht: 21. September 2022

Angenommen: 13. Januar 2023

Accepted Manuscript online:
18. Januar 2023

Artikel online veröffentlicht:
05. April 2023

• References

• 1 Sharko M, Wilcox L, Hong MK, Ancker JS. Variability in adolescent portal privacy features: how the unique privacy needs of the adolescent patient create a complex decision-making process. J Am Med Inform Assoc 2018; 25 (08) 1008-1017
• 2 Sharko M, Jameson R, Ancker JS, Krams L, Webber EC, Rosenbloom ST. State-by-state variability in adolescent privacy laws. Pediatrics 2022; 149 (06) e2021053458
• 3 Bedgood M, Kuelbs CL, Jones VG, Pageler N. Organizational perspectives on technical capabilities and barriers related to pediatric data sharing and confidentiality. JAMA Netw Open 2022; 5 (07) e2219692
• 4 Bayer R, Santelli J, Klitzman R. New challenges for electronic health records: confidentiality and access to sensitive health information about parents and adolescents. JAMA 2015; 313 (01) 29-30
• 5 Bialostozky M, Huang JS, Kuelbs CL. Are you in or are you out? Provider note sharing in pediatrics. Appl Clin Inform 2020; 11 (01) 166-171
• 6 Lee JA, Holland-Hall C. Patient portals for the adolescent and young adult population: benefits, risks and guidance for use. Curr Probl Pediatr Adolesc Health Care 2021; 51 (11) 101101
• 7 Gray SH, Pasternak RH, Gooding HC. et al; Society for Adolescent Health and Medicine. Recommendations for electronic health record use for delivery of adolescent health care. J Adolesc Health 2014; 54 (04) 487-490
• 8 Kanungo S, Barr J, Crutchfield P, Fealko C, Soares N. Ethical considerations on pediatric genetic testing results in electronic health records. Appl Clin Inform 2020; 11 (05) 755-763
• 9 Murugan A, Gooding H, Greenbaum J. et al. Lessons learned from OpenNotes learning mode and subsequent implementation across a pediatric health system. Appl Clin Inform 2022; 13 (01) 113-122
• 10 Ip W, Yang S, Parker J. et al. Assessment of prevalence of adolescent patient portal account access by guardians. JAMA Netw Open 2021; 4 (09) e2124733
• 11 Xie J, McPherson T, Powell A. et al. Ensuring adolescent patient portal confidentiality in the age of the cures act final rule. J Adolesc Health 2021; 69 (06) 933-939
• 12 Webber EC, Brick D, Scibilia JP, Dehnel P. Council on Clinical Information Technology, Committee on Medical Liability and Risk Management, Section on Telehealth care. Electronic communication of the health record and information with pediatric patients and their guardians. Pediatrics 2019; 144 (01) e20191359