Electronic Health Record Adolescent Confidentiality in a Safety Net Setting

Abstract

Background The 21st Century Cures Act provides improved access to one's medical record but presents new challenges to adolescent confidentiality in the domain of health care information technology. Adolescent patients, who have the right to confidential care in certain areas as dictated by state law, face the prospect of parents and guardians erroneously accessing their confidential health information.

Objectives Our institution, the largest safety net hospital in our region, sought to quantify the proportion of adolescent patient portal accounts likely being accessed by guardians and to implement corrective measures for the patient portal sign-up process in our electronic health record (EHR) system.

Methods We manually reviewed our institution's adolescent patient portal accounts based on email addresses associated with adolescents' accounts. We implemented EHR changes to address the potential for breach of confidentiality as a result of adolescent patient portal account creation by guardians. One intervention was creating a “guardrail rule” to prevent guardians from creating adolescent patient portal accounts with their own email addresses. After email reminders to adolescent patients to update their accounts, we deactivated accounts with concern for erroneous guardian access.

Results Sixty percent of our institution's adolescent patient portal accounts had possible direct access by guardians. Following requests to update account access, 425 (18.8%) of accounts had email addresses updated by adolescent patients and 1,830 (81.2%) accounts were deactivated.

Conclusion More nuanced EHR functionality for adolescent patients and their guardians can help health care systems provide confidential, patient-centered care for adolescents, while allowing guardians to access appropriate health information to facilitate care. There is an opportunity for a national consensus on how adolescents and their guardians can access health information by patient portal.

Keywords

adolescent medicine - confidentiality - patient portals - electronic health records - HIPAA - 21st Century Cures Act

Protection of Human and Animal Subjects

Not applicable.

Publication History

Received: 12 May 2023

Accepted: 25 August 2023

Accepted Manuscript online:
28 August 2023

Article published online:
01 November 2023

• References

• 1 Office of the National Coordinator for Health Information Technology, Department of Health and Human Services. 21st Century Cures Act: interoperability, information blocking, and the ONC Health IT certification program; 2020. Accessed July 29, 2023 at: https://www.federalregister.gov/documents/2020/05/01/2020-07419/21st-century-cures-act-interoperability-information-blocking-and-the-onc-health-it-certification
• 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 Schapiro NA, Mihaly LK. The 21st Century Cures Act and challenges to adolescent confidentiality. J Pediatr Health Care 2021; 35 (04) 439-442
• 4 Arvisais-Anhalt S, Lau M, Lehmann CU. et al. The 21st Century Cures Act and multiuser electronic health record access: potential pitfalls of information release. J Med Internet Res 2022; 24 (02) e34085
• 5 Guttmacher Institute. An overview of consent to reproductive health services by young people. Accessed July 29, 2023 at: https://www.guttmacher.org/state-policy/explore/overview-minors-consent-law
• 6 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
• 7 Bedgood M, Rabbani N, Brown C. et al. The prevalence of confidential content in adolescent progress notes prior to the 21st Century Cures Act information blocking mandate. Appl Clin Inform 2023; 14 (02) 337-344
• 8 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-e2124733
• 9 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
• 10 Elias J, Gossey JT, Xi W. et al. Sharing clinical notes while protecting adolescent confidentiality and maintaining parental insight. Appl Clin Inform 2023; 14 (03) 555-565
• 11 Gleason KT, Peereboom D, Wec A, Wolff JL. Patient portals to support care partner engagement in adolescent and adult populations: a scoping review. JAMA Netw Open 2022; 5 (12) e2248696
• 12 Pathak PR, Chou A. Confidential care for adolescents in the U.S. health care system. J Patient Cent Res Rev 2019; 6 (01) 46-50
• 13 Committee on Adolescence. The adolescent's right to confidential care when considering abortion. Pediatrics 2017; 139 (02) e20163861
• 14 Bourgeois FC, DesRoches CM, Bell SK. Ethical challenges raised by OpenNotes for pediatric and adolescent patients. Pediatrics 2018; 141 (06) e20172745
• 15 Wilkinson TA, Maslowsky J, Berlan ED. The pediatrician in the post-roe landscape. JAMA Pediatr 2022; 176 (10) 967-968
• 16 Xie J, Hogan A, McPherson T, Pageler N, Lee T, Carlson J. Creating a guardrail system to ensure appropriate activation of adolescent portal accounts. Appl Clin Inform 2023; 14 (02) 258-262
• 17 Commonwealth of Massachusetts. Massachusetts law about emancipation of minors. Accessed July 29, 2023 at: https://www.mass.gov/info-details/massachusetts-law-about-emancipation-of-minors
• 18 Commonwealth of Massachusetts. Guide on the disclosure of confidential information: Health care information. Accessed July 29, 2023 at: https://www.mass.gov/info-details/guide-on-the-disclosure-of-confidential-information-health-care-information#overview-
• 19 The General Court of the Commonwealth of Massachusetts. Written Informed Consent; Confidentiality; Patient Less than 16 Years of Age; 2020. Accessed July 29, 2023 at: https://malegislature.gov/Laws/GeneralLaws/PartI/TitleXVI/Chapter112/Section12R
• 20 Hoopes AJ, Cushing-Haugen KL, Coley RY. et al. Characteristics of adolescents who use secure messaging on a health system's patient portal. Pediatrics 2023; 152 (01) e2022060271
• 21 LeLaurin JH, Nguyen OT, Thompson LA. et al. Disparities in pediatric patient portal activation and feature use. JAMIA Open 2021; 4 (03) ooab086
• 22 Vogels EA. Digital divide persists even as Americans with lower incomes make gains in tech adoption. Pew Research Center; 2021. Accessed July 29, 2023 at: https://www.pewresearch.org/short-reads/2021/06/22/digital-divide-persists-even-as-americans-with-lower-incomes-make-gains-in-tech-adoption/