Confidentiality in Adolescent
and Young Adult Health Care Delivery
Cora Collette Breuner, MD,
Professor Department of Pediatrics, Adolescent Medicine Division
Adjunct Professor of Orthopedics and Sports Medicine
Chair Committee on Adolescence American Academy of Pediatrics
Seattle Children’s Hospital; University of Washington
4840 Sandpoint Way NE
Seattle, WA 98105
Phone: 206-987-2028; Fax: 206-987 3959
We know that health care providers should be able to deliver
confidential health services to consenting adolescents and young adults. We
know that adolescents and young adults want confidential health care services.
But how easy is this to accomplish? And does it really happen?
Sensitive services that are best provided in a confidential manner
include care related to sexually transmitted infections (STIs), contraception,
pregnancy, substance use/abuse, and mental health. Health care providers and
parents need to understand that confidentiality assurance does not discourage
parents from being actively engaged in the care of their adolescent children
but allows the teen to be more involved in their health care. This will prepare
them for independent decision-making as they transition to young adulthood with
better and more positive health outcomes.
Key health care professional organizations have formal policy
statements supporting the importance of confidentiality, including the American
Academy of Pediatrics, the American Academy of Family Physicians, the American
College of Obstetricians and Gynecologists, and the Society for Adolescent
Health and Medicine.
In 2015, the Adolescent Health Consortium Project was created with these
key organizations to determine: a) how often confidential services and private
time with the adolescent were provided by primary care physicians; and b) how
important confidentiality and private time were to adolescents/young adults,
providers, and parents, versus actual confidential care and private time
provided during clinical preventive service visits. Data were obtained from 36
focus groups held in four U.S. metropolitan areas (Denver, CO; New York, NY;
Washington, D.C.; and Chicago, IL) with providers, adolescents/young adults,
and parents; an online survey was also used to collect data from more than
2,000 adolescents, young adults, and parents.
Three main perspectives on confidentiality and private time emerged
from these focus groups and survey:
These provisions of care were considered an
integral part of quality adolescent preventive care.
There was support of the need for confidential
care with reported concerns around accessibility and quality of care.
There is a need for consistent messages to
address the concerns to improve the delivery of adolescent preventive services
and confidential care for adolescents and young adults.
Health care providers in their focus groups requested unanimous
messaging from national organizations on the value of confidential provision of
health care to adolescents and young adults. Also, providers reported confusion
surrounding laws, policies, and best practices for confidential care provision and
private time with teens and young adults. Health care providers requested more
clarity when learning about the provision of confidential care to adolescents
and young adults. Adolescents/young adults, parents, and health care providers
requested that relevant laws, policies, and best practices be disseminated in a
way that health care providers, patients, and parents can understand.
Strategies for initiating private time should be part of the messaging on how
to initiate the process. Guidance on how private visits with adolescents and
young adults should occur was also requested from all focus groups.
The goal of this project is to increase the utilization of preventive
service visits by adolescents and young adults that provides care in a
confidential manner. Each of the consortium member organizations is working
towards improving the care that is received and to get messages out about the
importance of confidential care and private time. Peer-reviewed articles on
various aspects of this research are in development and will be published in
the near future.
The opening statement of this article posed the question "How easy
is it to provide confidential services to adolescents and young adults?"
We know from our focus groups with providers that they are asking this question
too. The answer is YES – it is possible to provide confidential care. Medical
organizations are working together to provide easily accessible resources for health
care providers so that all adolescent and young adults receive the excellent
health care that they deserve.
Position paper: Confidentiality Protections for
Adolescents and Young Adults in the Health Care Billing and Insurance Claims
Process. The Society for Adolescent Health and Medicine and the American
Academy of Pediatrics. J Adolesc Health.
2016; 58: 374 -7.
Edman JC, Adams SH, Park MJ, Irwin CE Jr. Who gets
confidential care? Disparities in a national sample of adolescents. J Adolesc Health. 2010;46(4):393-5.
Rand CM. Auinger P. Klein JD. Weitzman M. Preventive
counseling at adolescent ambulatory visits. J Adolesc Health.2005; 37(2):
Morreale MC, Kapphahn CJ, Elster AB, Juszczak L, Klein
JD. Access to health care for adolescents and young adults. J Adolesc Health.
Understanding Protections for Adolescents and Young Adults
“Consent” and “confidentiality” are distinct legal concepts that
are often confused. Although they are not identical, consent and
confidentiality are closely linked to clinical practice, ethical guidelines,
professional policies, and standards of care, as well as in state and federal
laws. Confidentiality must be understood in the context of the broader legal
framework for consent for health care.
The age of majority is 18
in almost all states. Competent adults, including young adults age 18 or older,
may consent for themselves. Parental consent is generally required for minors
to receive health care, but numerous alternatives exist that may include
consent by a legal guardian, court order, or an authorized agency. Many
exceptions to parental consent requirements are contained in state minor
All 50 states and D.C. have minor consent laws that are based
either on status or services, with numerous variations occurring among states. Consent
based on the status of the minor usually extends to all or most services. Minor
consent for specific services sometimes includes age limitations or a specific
scope of services. Capacity to provide informed consent is implicitly required
even if not specified. Minor consent laws sometimes permit notification of
parents but may do so only if it is essential to the health of the minor, or if
the minor’s health would not be harmed.
Minors who may be allowed to consent for themselves include:
Minors living apart from parents
Minors over a certain age
High school graduates
Minor parents (for self and/or child)
Minors in military service
The services for which minors may be authorized to consent include:
Prenatal, maternity, and pregnancy-related care
STD prevention, diagnosis, and treatment
HIV/AIDS testing and treatment
Outpatient mental health services
Examination and treatment for sexual health
Confidentiality is a key concern both for both adolescent minors
and for young adults.
goals of confidentiality include protecting the health of individual youth as
well as the public health and avoiding negative health outcomes by encouraging
young people to seek needed care. The importance of confidentiality protection
has been supported by decades of research findings demonstrating that privacy
concerns influence: whether adolescents seek care, where they seek care, when
they seek care, and how candid they are with health care providers.
Many federal and state laws include confidentiality protections
along with provisions articulating when confidential information must, may, or
may not be disclosed. Even when information is legally protected as
confidential, circumstances exist in which it may be disclosed or must be
disclosed. Examples of mandated disclosures include child abuse reporting of
physical, sexual, and emotional abuse; patient threats of harm to self or
others; and other disclosures required by law such as for domestic violence or
Important federal laws that protect confidentiality:
Important state laws that protect confidentiality:
- Minor consent laws
- Medical privacy laws
Confidentiality can be breached through billing and health insurance claims. In particular, explanations of benefits (EOBs) are ubiquitous and often contain information that reveals the identity of the provider or the nature of the service. Federal laws that pertain to billing and insurance communications contain both confidentiality protections and disclosure requirements. State laws are beginning to incorporate measures to increase confidentiality protections into insurance communications that build on and expand the special confidentiality protections offered in the HIPAA Privacy Rule. Some protect both minors and adults; some only protect adults.
EHRs and web portals also have brought new confidentiality challenges. Different sites are adopting different standards for who has access — the adolescent minor patient, the young adult patient, and/or the parent. Health care sites also are wrestling with how to integrate HIPAA Privacy Rule protections, minor consent laws protections, and insurance disclosure requirements into the structure of their EHRs and web portals.
The evolution of confidentiality protections for the health information of adolescents and young adults is an ongoing story. The story began half a century ago when the earliest minor consent laws were enacted, and it continues to the present day as health care providers, their adolescent and young adult patients, families, and policymakers work to make sure adolescents and young adults can access essential care.
References & Resources
English et al. State Minor Consent Laws: A Summary, 3rd ed. Chapel Hill, NC: Center for Adolescent Health & the Law, 2010. www.cahl.org.
Guttmacher Institute. An Overview of Minors' Consent Laws, January 2018. https://www.guttmacher.org/state-policy/explore/overview-minors-consent-law.
Ford C et al. Confidential Health Care for Adolescents: Position Paper of the Society for Adolescent Medicine. J Adolesc Health 2004;35:160-167. http://www.adolescenthealth.org/SAHM_Main/media/Advocacy/Positions/Aug-04-Confidential_Health_Care_for_Adolescents.pdf.
English A and Ford CA. The HIPAA Privacy Rule and Adolescents: Legal Questions and Clinical Challenges. Perspectives on Sexual and Reproductive Health 2004;36:80-86. https://www.guttmacher.org/journals/psrh/2004/hipaa-privacy-rule-and-adolescents-legal-questions-and-clinical-challenges.
English A et al. Confidentiality, Third-Party Billing, & the Health Insurance Claims Process. Washington, DC: National Family Planning & Reproductive Health Association (NFPRA), 2015. http://www.confidentialandcovered.com/file/ConfidentialandCovered_WhitePaper.pdf.
Burstein G et al. Confidentiality Protections for Adolescents and Young Adults in the Health Care Billing and Insurance Claims Process: Position Paper of the Society for Adolescent Health & Medicine and American Academy of Pediatrics. J Adolesc Health 2016;58:374-377. http://www.adolescenthealth.org/SAHM_Main/media/Advocacy/Positions/Confidentiality-Position-Statement_1.pdf.
Gray S et al. Recommendations for Electronic Health Record Use for Delivery of Adolescent Health Care: Position Paper of the Society for Adolescent Health and Medicine. J Adolesc Health 2014;54:487-490. http://www.adolescenthealth.org/SAHM_Main/media/Advocacy/Positions/Apr-14-Elec-Health-Records.pdf.