Regulations are becoming more complicated and vary by state.
Reviewed by members of the North American Society for Pediatric and Adolescent Gynecology. NASPAG is dedicated to conducting and encouraging programs of medical education in the field of pediatric and adolescent gynecology. Its focus is to provide a forum for education, research and communication among health professionals who provide gynecologic care to children and adolescents.
Dr Taylor is Assistant Professor of Pediatrics, University of Virginia School of Medicine, Department of Pediatrics
Dr Williams is Assistant Professor of Clinical Pediatrics, Indiana University School of Medicine, Department of Pediatrics, Section of Adolescent Medicine
Dr Blythe is Professor of Pediatrics & Adjunct Professor of Gynecology, Indiana University School of Medicine, Department of Pediatrics, Section of Adolescent Medicine
Katherine is a 16-year-old whom you have been following for 3 years for dysmenorrhea. She recently started having sex with her boyfriend, is having some vaginal discomfort, and is concerned that she might have a sexually transmitted infection (STI). She knows that she should come and see you for testing, but wonders how to accomplish this without having to tell her mom what is going on. She decides that she will try to schedule the appointment herself, and if she is unable to, will just wait until her next routine follow-up visit in 2 months.
With a national focus on healthcare reform and universal electronic health records (EHRs), an incentivized program for adopting EHRs and meaningful use, the proliferation of electronic health portals, and threats of violating the Health Insurance Portability and Accountability (HIPPA) Act, providers who care for adolescents may find themselves confused by conflicting responsibilities to fulfill institutional or practice requirements for maintaining EHRs, meet key quality indicators, and ensure appropriate confidentiality and privacy for their adolescent patients.
Physicians who provide healthcare to adolescents influence the health trajectories of a population that faces significant health disparities and shoulders a large burden of preventable morbidity and mortality. The provision of confidential services to adolescents is supported not only by the basic ethical tenets of autonomy and beneficence, but also by best practices as described in the American Academy of Pediatrics’ Bright Futures1 and numerous professional organizations’ policies and position statements. Threats to confidentiality affect adolescents’ willingness to seek care and to disclose sensitive information.2-6 In one study of 556 unmarried, sexually active females attending family planning clinics, when patients were told that parents would be notified if they were prescribed contraceptives, 59% indicated they would stop using all sexual healthcare services, and 11% indicated they would discontinue or delay STI tests or treatment.7 Only 1% would stop having sex, highlighting the degree to which the population would remain at high need but opt out of care.
Protections for adolescent confidentiality are codified in state consent laws, federal regulations, federal case law, and HIPAA. The 2002 Privacy Rule enacted as part of HIPAA 8 is the newest federal regulation to support confidentiality and privacy in the care of adolescent patients. HIPAA protects individuals’ right to access and limit the disclosure of their personal health information. This protection extends to adolescents who can legally consent to aspects of their own healthcare, do not require parental consent, or whose parents have agreed to confidential care for their adolescent, but it is still limited by applicable state and federal laws. Provider discretion in disclosing to parents is allowed when laws are silent, unclear, or clearly allow disclosure to parents. It has been argued that the HIPAA privacy law provides substantial support for confidential services for adolescents, but requires provider vigilance, payer cooperation, and patient education.9 For a review of state minor consent laws see English and colleagues10 or the Guttmacher Institute’s website for an updated state-by-state description of applicable laws (http://www.guttmacher.org/sections/adolescents.php).
The Affordable Care Act also plays a role in expanding access to sensitive services and may affect the ability of adolescents and young adults to access these services confidentially. The ACA may increase the number of adolescents seeking sensitive services by providing access to previously uninsured or underinsured adolescents and young adults, allowing young people to remain on their parents’ insurances plans until age 26, and also by expanding the number of services, some of which are sensitive, that are mandated as part of minimal coverage available without cost sharing.11,12
It is important to have common definitions of often-used and basic terminology surrounding EHRs. A review of recent relevant legislation provides a timeline and serves as the context for a discussion of adolescent confidentiality and EHRs (Table 1).
EHRs have the potential to improve health in general and have shown promise in improving healthcare delivery for adolescent patients specifically. Using EHRs is anticipated to enhance the delivery of healthcare in the United States by reducing cost, preventing medical errors, and enhancing overall accessibility and effectiveness.13 Researchers also hope to use the massive amount of previously unavailable data provided by EHRs to open up new avenues for investigation into the prevention and treatment of common illnesses. For adolescents in particular, EHR-based decision support tools for providers have demonstrated effectiveness in increasing vaccination rates and supporting the provision of appropriate care to adolescents with ADHD and depression.14-16
The goal of incentivizing the adoption of EHRs and meaningful use is to promote quality, safety, and efficacy in patient care, but without careful attention to implementation, it may also compromise adolescents’ access to confidential care. The Health Information Technology for Economic and Clinical Health (HITECH) Act, part of the American Recovery and Reinvestment Act of 2009, promotes the adoption of EHRs and strengthens HIPAA enforcement. It also allows the Centers for Medicare & Medicaid Services (CMS) to incentivize the adoption, implementation, and meaningful use of EHR technology. Meaningful use is being incentivized in a 3-stage process over 5 years (2011–2016) with continued modifications and updates occurring. (http://www.gpo.gov/fdsys/pkg/FR-2014-09-04/pdf/2014-21021.pdf). One part of meeting criteria for meaningful use entails reporting on clinical quality measures, many that pertain to adolescents and have traditionally been provided confidentially, including chlamydia testing, depression screening, and drug and alcohol dependence treatment. Meaningful use also incentivizes the use of patient health portals and after-visit clinical summary statement, both aspects of EHRs that have been areas of concern for the inadvertent disclosure of adolescents’ protected health information.12
It is not yet clear exactly how EHRs will affect confidential care for adolescents, but the potential for privacy breaches exists at nearly every step of a health encounter with an adolescent. If the adolescent perceives an EHR to be a threat to confidentiality, EHRs may have the unintended consequence of reducing an adolescent’s willingness to access healthcare. By examining an illustrative clinical case like Katherine’s, these potential threats become more obvious (Table 2).
Even an EHR system designed to be sensitive and responsive to adolescents’ confidentiality needs cannot entirely avoid inadvertent disclosures without provider and staff training and patient and family education. The Society for Adolescent Health and Medicine (SAHM) and the American College of Obstetricians and Gynecologists emphasize the need for education and training to maintain adolescent confidentiality.17 The SAHM position paper recognizes that “protection of confidentiality is an ongoing, daily process” and recommends that employee training for EHRs include a review of techniques to protect confidential information for all patients, including adolescents.18
Adolescents and their parents must also be educated about what information is considered confidential under state and federal laws, how information will be protected, how information may be shared, and how to access information electronically.
Clinicians who see adolescents must familiarize themselves with the laws concerning confidential services and with the specific capabilities of their system’s EHRs to protect patient privacy. Providers must also engage EHR vendors and IT professionals to ensure that adolescent privacy needs are met. Training staff and colleagues about how to manage patient information at both routine and emergent encounters will strengthen adolescent access to appropriate care. Clinicians must also seek to educate their adolescent patients and their families about confidentiality.
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2. Zabin LS, Stark HA, Emerson MR. Reasons for delay in contraceptive clinic utilization: adolescent clinic and nonclinic populations compared. J Adolesc Health. 1991;12(3):225–232.
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8. Health insurance portability and accountability act of 1996. Public Law. Vol 1041996:191.
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10. English A, Bass L, Boyle AD, Eshragh F. State minor consent laws: A summary. 2010.
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17. American College of Obstetricians and Gynecologists. Adolescent confidentiality and electronic health records. Committee Opinion No. 599. Vol 123. Obstet Gynecol. 2014:1148–1150.
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