Subscribe to RSS
![](/products/assets/desktop/img/oa-logo.png)
DOI: 10.1055/a-2084-4650
Sharing Clinical Notes while Protecting Adolescent Confidentiality and Maintaining Parental Insight
![](https://www.thieme-connect.de/media/10.1055-s-00035026/202303/lookinside/thumbnails/10-1055-a-2084-4650_202212soa0328-1.jpg)
Abstract
Background The 21st Century Cures Act mandates sharing electronic health records (EHRs) with patients. Health care providers must ensure confidential sharing of medical information with adolescents while maintaining parental insight into adolescent health. Given variability in state laws, provider opinions, EHR systems, and technological limitations, consensus on best practices to achieve adolescent clinical note sharing at scale is needed.
Objectives This study aimed to identify an effective intervention process to implement adolescent clinical note sharing, including ensuring adolescent portal account registration accuracy, across a large multihospital health care system comprising inpatient, emergency, and ambulatory settings.
Methods A query was built to assess portal account registration accuracy. At a large multihospital health care system, 80.0% of 12- to 17-year-old patient portal accounts were classified as inaccurately registered (IR) under a parent or registration accuracy unknown (RAU). To increase accurately registered (AR) accounts, the following interventions were pursued: (1) distribution of standardized portal enrollment training; (2) patient outreach email campaign to reregister 29,599 portal accounts; (3) restriction of access to remaining IR and RAU accounts. Proxy portal configurations were also optimized. Subsequently, adolescent clinical note sharing was implemented.
Results Distribution of standardized training materials decreased IR and increased AR accounts (p = 0.0492 and 0.0058, respectively). Our email campaign (response rate: 26.8%) was most effective in decreasing IR and RAU accounts and increasing AR accounts (p < 0.002 for all categories). Remaining IR and RAU accounts, 54.6% of adolescent portal accounts, were subsequently restricted. Postrestriction, IR accounts continued declining significantly (p = 0.0056). Proxy portal enhancements with interventions deployed increased proxy portal account adoption.
Conclusion A multistep intervention process can be utilized to effectively implement adolescent clinical note sharing at a large scale across care settings. Improvements to EHR technology, portal enrollment training, adolescent/proxy portal settings, detection, and automation in reenrollment of inaccurate portal accounts are needed to maintain integrity of adolescent portal access.
Protection of Human and Animal Subjects
This project was performed in compliance with the World Medical Association Declaration of Helsinki on Ethical Principles for Medical Research Involving Human Subjects. All information regarding this project involved the use of deidentified personal health information and was exempt from review by the Weill Cornell Medicine Institutional Review Board.
Publication History
Received: 14 December 2022
Accepted: 19 April 2023
Accepted Manuscript online:
02 May 2023
Article published online:
26 July 2023
© 2023. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution-NonDerivative-NonCommercial License, permitting copying and reproduction so long as the original work is given appropriate credit. Contents may not be used for commercial purposes, or adapted, remixed, transformed or built upon. (https://creativecommons.org/licenses/by-nc-nd/4.0/)
Georg Thieme Verlag KG
Rüdigerstraße 14, 70469 Stuttgart, Germany
-
References
- 1 Ford CA, Millstein SG, Halpern-Felsher BL, Irwin Jr CE. Influence of physician confidentiality assurances on adolescents' willingness to disclose information and seek future health care. A randomized controlled trial. JAMA 1997; 278 (12) 1029-1034
- 2 Lehrer JA, Pantell R, Tebb K, Shafer MA. Forgone Health Care among U.S. Adolescents: Associations between Risk Characteristics and Confidentiality Concern. J Adolesc Heal 2007; 40 (03) 218-26
- 3 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
- 4 Carlson J, Goldstein R, Hoover K, Tyson N. NASPAG/SAHM statement: the 21st century cures act and adolescent confidentiality. J Adolesc Health 2021; 68 (02) 426-428
- 5 Confidentiality in Adolescent Health Care. Confidentiality in adolescent health care: ACOG committee opinion, number 803. Obstet Gynecol 2020; 135 (04) e171-e177
- 6 Blythe MJ, Adelman WP, Breuner CC. et al. Standards for health information technology to ensure adolescent privacy. Pediatrics 2012; 130 (05) 987-990
- 7 Huang JS, Yueh R, Ma S, Cruz R, Bauman L, Choi LJ. Adolescents' and young adults' satisfaction with and understanding of medical notes from a pediatric gastroenterology practice: a cross-sectional cohort study. J Pediatr 2019; 215: 264-266
- 8 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
- 9 Vukadinovich DM. Minors' rights to consent to treatment: navigating the complexity of State laws. J Health Law 2004; 37 (04) 667-691
- 10 Federal Register. 21st Century Cures Act: interoperability, information blocking, and the ONC health IT Certification Program. Accessed October 1, 2022 at: https://www.federalregister.gov/documents/2020/05/01/2020–07419/21st-century-cures-act-interoperability-information-blocking-and-the-onc-health-it-certification#h-141
- 11 Pediatric Information Blocking Use Cases. . Home. Accessed October 1, 2022 at: https://www.aap.org/en/practice-management/health-information-technology/pediatric-information-blocking-use-cases/
- 12 Ford CA, Bourgeois F, Buckelew SM. et al. Twenty-first century cures act final rule and adolescent health care: leadership education in adolescent health (LEAH) program experiences. J Adolesc Health 2021; 69 (06) 873-877
- 13 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
- 14 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
- 15 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
- 16 NY PHL §§ 2305, 2311, 2504, 2780(5), 2781, Ment Hygiene L § 33.21. Accessed November 26, 2022 at: https://regs.health.ny.gov/content/section-234-minors
- 17 Weiss Catherine B, Kwon E, Shapiro RA. et al. Teenagers health care and the law. 2018 https://www.nyclu.org/sites/default/files/thl.pdf
- 18 Comp NY. . Codes R. & Regs. Tit. 10 § 23.4, Adopted New York State Register March 18, 2016/Volume XXXVIII, Issue 20, eff.5/18/2016. https://casetext.com/regulation/new-york-codes-rules-and-regulations/title-10-department-of-health/chapter-i-state-sanitary-code/part-23-sexually-transmissible-diseases/section-234-minors
- 19 Miklin DJ, Vangara SS, Delamater AM, Goodman KW. Understanding of and barriers to electronic health record patient portal access in a culturally diverse pediatric population. JMIR Med Inform 2019; 7 (02) e11570
- 20 Carlson JL, Pageler N, McPherson T, Anoshiravani A. Providing online portal access to families of adolescents and young adults with diminished capacity at an academic children's hospital: a case report. Appl Clin Inform 2023; 14 (01) 128-133
- 21 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