A 13-year-old presents for a sports physical and is found to be struggling with depressive symptoms. Another youth with commercial insurance seeks testing for sexually transmitted infection at an urgent care center. Meanwhile, a 16-year-old presents to a school-based health center requesting emergency contraception, and another youth in foster care is admitted for an asthma exacerbation related to experimentation with a vape pen.
How can pediatric clinicians promote effective communication and high-quality care for adolescents and young adults while ensuring the safe handling of sensitive health information?
A new AAP policy statement and accompanying technical report provide guidance for pediatric health care professionals to optimize confidentiality practices and protections for adolescents and young adults across the spectrum of care. Recommendations also are offered for clinics, health systems, payers and electronic health record (EHR) developers.
Confidentiality in the Care of Adolescents: Policy Statement is available at https://doi.org/10.1542/peds.2024-066326, and Confidentiality in the Care of Adolescents: Technical Report is available at https://doi.org/10.1542/peds.2024-066327. Both documents are from the Committee on Adolescence and Committee on Practice and Ambulatory Medicine and will be published in the May issue of Pediatrics.
Growing complexities and persistent gaps
Confidentiality, a cornerstone of adolescent health care, promotes engagement in care and forthright exchange of health information. It is developmentally appropriate in the context of increasing autonomy and growing decision-making capacity, and has profound impacts on health care access, outcomes and safety.
Although confidentiality has been codified in both federal and state laws, as well as professional guidelines and ethical standards, profound challenges remain to implementing high-quality protections for adolescents and young adults across settings and circumstances. Guidance on handling sensitive information may differ based on geography, the patient’s age and legal status, and the type of service needed, creating a complex landscape for patients, families and health care professionals.
In addition, there are many points of vulnerability in contemporary adolescent health care where confidentiality may be compromised due to technological advancements such as EHRs, patient portals, automated reminders and result notifications, and the advancement of “open notes” and prohibitions against information blocking. Further, longstanding issues related to billing and claims remain.
Opportunity at hand
These challenges are substantial barriers to high-quality, equitable care for young people. Yet, they also represent opportunities for collaboration and action among pediatricians, allied health professionals, health care administrators, technology vendors, policymakers, and adolescents, young adults and families.
The policy statement and technical report provide guidance regarding confidentiality in the care of adolescents in view of the importance of confidentiality, the profound health challenges youth face, the increasingly complex health care landscape and the persistent deficiencies in systems and supports for youth. This guidance complements several AAP policy statements regarding specific facets of adolescent health care.
The policy statement provides a detailed review of the legal and regulatory context of confidentiality provisions, an overview of key stakeholder perspectives, an exploration of technological factors, a summary of key issues in billing and claims processes, and delineation of the limits of confidentiality and the unique needs of key subgroups of youth.
Recommendations
The policy statement puts forth key recommendations in the following areas:
- Pediatrician-patient relationship
- respecting confidentiality when legally required or permitted in the local context of care,
- always prioritizing the health and well-being of the adolescent/young adult patient,
- supporting effective engagement of parents and other caring adults in meeting the patient’s developmental and health needs, and
- promoting equitable protections for all youth.
- Practice management and operations: recommendations for clinical practices regarding processes and policies that support confidentiality, effective communication and access to care for youth.
- Health care systems and technology: recommendations for health systems and EHR vendors regarding the development and consistent implementation of confidentiality protections, with a particular focus on data segmentation.
- Education, training and practice improvement: recommendations regarding high-quality educational and training resources on confidentiality for adolescent/young adult patients, families and all members of the health care team.
- Other health care team members: recommendations for key health care partners, including pharmacies, radiology venues, clinical laboratories and other service providers.
- Billing and claims: recommendations regarding optimization of billing and claims processes to improve access to needed services and the appropriate handling of sensitive information, regardless of insurance status.
- Advocacy: recommendations regarding opportunities for pediatricians to advocate locally and more broadly around confidentiality protections for youth.
- Other issues: recommendations regarding broader structural and policy advancements and research.
Dr. Chung is a lead author of the policy statement and technical report and a member of the AAP Committee on Adolescence.
