From the Experts

Confidentiality in Adolescent and Young Adult Health Care Delivery

 

Cora Collette Breuner, MD, MPH, FAAP

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

cora.breuner@seattlechildrens.org

 

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:

1.      These provisions of care were considered an integral part of quality adolescent preventive care.

2.      There was support of the need for confidential care with reported concerns around accessibility and quality of care.

3.      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.

 

References:

  • 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): 87-93.
  • Morreale MC, Kapphahn CJ, Elster AB, Juszczak L, Klein JD. Access to health care for adolescents and young adults. J Adolesc Health. 2015;35:342-344.

 

Confidentiality? Consent? Understanding Protections for Adolescents and Young Adults

 

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Abigail English, JD

Director, Center for Adolescent Health & the Law

abigail.english.cahl@gmail.com

 

“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 consent laws.

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:

  • Emanicipated minors
  • Minors living apart from parents
  • "Mature" minors
  • Minors over a certain age
  • High school graduates
  • Pregnant minors
  • Married minors
  • Minor parents (for self and/or child)
  • Minors in military service
  • Incarcerated minors 

The services for which minors may be authorized to consent include:

  • Prenatal, maternity, and pregnancy-related care
  • Contraceptive services
  • 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.

Underlying 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 certain injuries.

Important federal laws that protect confidentiality:

  • HIPAA Privacy Rule
  • FERPA
  • Title X Family Planning program
  • Medicaid
  • Ryan White HIV/AIDS program
  • FQHCs
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

Consent 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.

Confidentiality Resources

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.