Elsevier

Journal of Pediatric Health Care

Volume 35, Issue 4, July–August 2021, Pages 439-442
Journal of Pediatric Health Care

Health Policy
The 21st Century Cures Act and Challenges to Adolescent Confidentiality

https://doi.org/10.1016/j.pedhc.2021.03.005Get rights and content

Confidentiality is an important part of adolescent health care, providing a safe arena for young people to address sensitive health concerns and develop independent relationships with their providers. State and federal laws support a range of adolescent confidentiality protections. However, the full implementation of the 21st Century Cures Act, with the release of all medical records to patients and caregivers, may endanger this expectation of privacy. This policy brief reviews implications of the open notes requirement of the Cures Act, suggests strategies to improve care for adolescent patients, and recommends advocacy to improve the 2020 Final Rule implementation.

Section snippets

INTRODUCTION

The importance of confidentiality in the care of adolescents is well established and supported by a range of federal and state laws and court decisions (Schapiro & Mejia, 2018). Confidential care encourages young people to address sensitive concerns and enables them to develop independent relationships with their providers (Sherer & Radzik, 2016). Health care providers generally encourage youth to communicate with their parents while recognizing that the assurance of privacy—when supported by

THE 21ST CENTURY CURES ACT

The multi-issue 21st Century Cures Act passed in 2016. A Final Rule interpreting this law—over 300 pages—was published in May 2020 and took full effect on April 5, 2021. Many elements of the law focus on reconciling the protection of confidential patient information with the ability to share readable electronic records between health care institutions (Mello, Adler-Milstein, Ding, & Savage, 2018). The requirement for clinic visit notes that can be shared with patients and other institutions has

INFORMATION BLOCKING AND ADOLESCENT CONFIDENTIALITY

Now that the 21st Century Cures Act is fully implemented, health care institutions could face penalties of up to a million dollars if they block patient access to any information from their medical records (The Office of the National Coordinator for Health Information Technology, n.d.). The threat of these steep fines could lead to institutional pressure on providers to release all information without attention to confidential adolescent care. However, institutions can limit information-sharing

NEXT STEPS

As full implementation of the 21st Century Cures Act (U.S. Government Publishing Office, 2016) begins, providers should work to ensure that their patient's needs and interests are addressed. The American Academy of Pediatrics (Webber et al., 2019), the Society for Adolescent Health and Medicine, and the North American Society for Pediatric and Adolescent Gynecology (Carlson, Goldstein, Hoover, & Tyson, 2021) have all issued recommendations that support providers working to provide confidential

Naomi A. Schapiro, Professor Emeritus, Department of Family Health Care Nursing, University of California San Francisco, San Francisco, CA.

References (18)

There are more references available in the full text version of this article.

Cited by (13)

  • Variability in Sexual History Documentation in a Primary Care Electronic Health Record System

    2022, Journal of Adolescent Health
    Citation Excerpt :

    Although allowing patients and families to view chart notes within health system electronic portals may increase engagement in health care, data demonstrate that both providers and families remain concerned about this practice for the adolescent patient population, especially in regards to sensitive topics such as mental health and sexual health [26,27]. Many caregivers retain proxy access to chart notes even as a child becomes an adolescent, increasing the possibility that caregivers may be able to view documented information from confidential discussions [17,28]. Establishing standardized practices for documentation of sexual history is key for the delivery of preventative services to address adolescent-specific health vulnerabilities, including the disproportionate impact of STIs and HIV.

  • Health, Safety, and Well-Being of Adolescents and Young Adults in the United States: What Is at Stake Beyond 2021?

    2022, Journal of Adolescent Health
    Citation Excerpt :

    The ONC Rule's information blocking ban has major implications for the confidentiality of electronic health information [131]. The Rule has unintended consequences for AYAs, whose privacy may be compromised, and for healthcare professionals caring for this age group, who face challenges in maintaining confidentiality protections for their patients' sensitive health information [132–135]. Three of the Rule's information blocking ban exceptions—Privacy, Preventing Harm, and Infeasibility—are particularly relevant for AYAs [131,136].

  • Why Are You Asking? Sexual Orientation and Gender Identity Assessment in Clinical Care

    2021, Journal of Adolescent Health
    Citation Excerpt :

    If the patient is comfortable having SOGI information documented in their medical record, their affirmed name and pronoun should be used for all charting. Clinicians should respect patient privacy concerns and, particularly, as a consequence of the 21st Century Cures Act, make adolescents aware of when caregivers have access to their medical notes [2]. Although assigned sex (i.e., natal sex) is used by some electronic health records (EHRs) to create testing algorithms, this can cause problems through a failure to account for biological and gender diversity.

View all citing articles on Scopus

Naomi A. Schapiro, Professor Emeritus, Department of Family Health Care Nursing, University of California San Francisco, San Francisco, CA.

Lisa Klee Mihaly, Assistant Clinical Professor, Department of Family Health Care Nursing, and Division of Adolescent Medicine, University of California San Francisco, San Francisco, CA.

Conflicts of interest: None to report.

View full text