Confidentiality Practices in Adolescent Health Care

Caught between childhood and adulthood, many adolescents encounter sensitive health issues but their status as minors often limits their access to fully confidential care and counseling. Health care confidentiality, as defined by the Health Insurance Portability and Accountability Act of 1996 (HIPAA), is a critical component of the American health care system and is recognized as a fundamental human right for minors as well as adult patients [1]. In every state, health care professionals are legally required to inform parents or guardians in the case of statutory rape, abuse, or when a patient is a known danger to themselves or a known victim; however, most guidance on minor consent and health privacy varies between states, affecting potential areas of conflict between teens and parents from vaccines to mental health [2–4]. Confidentiality is valuable in adolescent health care and has improved markedly in the last three decades, but challenges remain and recent developments in electronic health record (EHR) systems and protection laws may have unforeseen impacts on the future of adolescent health care [5].  

 

In a recent study, a significant percentage of adolescent participants reported they would forgo health care altogether if they were not assured confidentiality, 69% had health concerns they would not reveal to parents or friends, and 75% had concerns about the privacy of the health center at their school [6]. Girls are more often concerned about privacy, particularly for sexual and reproductive health care, and are more likely to forgo care as a result [7]. These findings are troubling as research suggests adolescents who cite confidentiality concerns are at greater risk for many sensitive health issues (e.g., birth control non-use, alcohol use, depressive symptoms, and suicidal ideation) [7].  

 

Instituting standard screenings and allowing adequate time for dialogue during a clinic visit may facilitate clinician-adolescent discussion and reduce risk behavior [8]. However, the transition to EHR and third-party messaging portals over the last decade has potentially exacerbated privacy issues for adolescents. A study completed over the course of six years (2014-2020) found that more than half of adolescent patient portal accounts—in which many pre-visit screenings and questionnaires are completed—were accessed by guardians [9]. The authors suggest their results have implications for the 21st Century Cures Act Final Rule, which went into effect April 2021 and allows adolescents and their legal guardians electronic access to selected health information [10]. Most health systems establish proxy accounts for guardians, but adolescents may not be afforded the privacy they need. 

 

The rapid transition to telemedicine at the onset of the COVID-19 pandemic further complicated patient confidentiality issues, particularly for adolescents who may not have privacy in their homes or on their electronic devices. Socioeconomic factors, including access to internet, video technology, and consistent primary health care, heighten these concerns [7]. Recent literature suggests implementing comprehensive solutions across the health system continuum, from educating EHR vendors/app developers and advocating for privacy laws to engage frontline clinicians and local healthcare IT departments to ensure appropriate portal use [11].  

 

Adolescent confidentiality is controversial due to variation in perceptions of maturity and concerns about restricting guardian access. Clinicians face ethical dilemmas when treating adolescents, who receive pressure from their parents and guardians to avoid certain risk behaviors (e.g., substance use and unprotected sexual intercourse) while experiencing contradictory sociocultural pressure to engage in the same behaviors. Ensuring adolescent health confidentiality requires protection of private screening practices and EHR information sharing for both in-person and virtual care. 

 

References 

 

  1. Pathak PR, Chou A. Confidential Care for Adolescents in the U.S. Health Care System.Journal of Patient-Centered Research and Reviews. 2019;6(1):46-50. doi:10.17294/2330-0698.1656 
  2. Shain B,Committee on Adolescence, Braverman PK, et al. Suicide and Suicide Attempts in Adolescents. Pediatrics. 2016;138(1):e20161420. doi:10.1542/peds.2016-1420
  3. Madison AB, Feldman-Winter L, Finkel M, McAbee GN. Commentary: Consensual Adolescent Sexual Activity With Adult Partners—Conflict Between Confidentiality and Physician Reporting Requirements Under Child Abuse Laws. Pediatrics. 2001;107(2):e16-e16. doi:10.1542/peds.107.2.e16
  4. Rae WA. Adolescent Health Risk Behavior: When Do Pediatric Psychologists Break Confidentiality?Journal of Pediatric Psychology. 2002;27(6):541-549. doi:10.1093/jpepsy/27.6.541
  5. Harris SK, Aalsma MC, Weitzman ER, et al. Research on Clinical Preventive Services for Adolescents and Young Adults: Where Are We and Where Do We Need to Go? Journal of Adolescent Health. 2017;60(3):249-260. doi:10.1016/j.jadohealth.2016.10.005
  6. Cheng TL. Confidentiality in Health Care: A Survey of Knowledge, Perceptions, and Attitudes Among High School Students.JAMA. 1993;269(11):1404. doi:10.1001/jama.1993.03500110072038
  7. Lehrer JA, Pantell R, Tebb K, Shafer MA. Forgone Health Care among U.S. Adolescents: Associations between Risk Characteristics and Confidentiality Concern. Journal of Adolescent Health. 2007;40(3):218-226. doi:10.1016/j.jadohealth.2006.09.015
  8. Klein JD, Allan MJ, Elster AB, et al. Improving Adolescent Preventive Care in Community Health Centers. Pediatrics. 2001;107(2):318-327. doi:10.1542/peds.107.2.318
  9. Ip W, Yang S, Parker J, et al. Assessment of Prevalence of Adolescent Patient Portal Account Access by Guardians. JAMA Netw Open. 2021;4(9):e2124733. doi:10.1001/jamanetworkopen.2021.24733
  10. Rucker DW. Implementing the Cures Act — Bringing Consumer Computing to Health Care. N Engl J Med. 2020;382(19):1779-1781. doi:10.1056/NEJMp2003890
  11. Pageler NM, Webber EC, Lund DP. Implications of the 21st Century Cures Act in Pediatrics. Pediatrics. 2021;147(3):e2020034199. doi:10.1542/peds.2020-034199
  12. Maradiegue A. Minor’s Rights Versus Parental Rights: Review of Legal Issues in Adolescent Health Care. Journal of Midwifery & Women’s Health. 2003;48(3):170-177. doi:10.1016/S1526-9523(03)00070-9