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AAP endorses statement raising awareness of teen confidentiality issues in Cures Act

April 6, 2021

An AAP-endorsed position statement is highlighting the need for practices and institutions to safeguard adolescent confidentiality in the implementation of portions of the federal 21st Century Cures Act.

One aspect of the Cures Act will enable patients to have increased access, use and exchange of the health information in their electronic health records (EHRs). The final rule from the Office of the National Coordinator for Health Information Technology outlines the interoperability requirements. These include provisions designed to prevent information blocking that take effect in April.

The position statement from the North American Society for Pediatric and Adolescent Gynecology (NASPAG) and the Society for Adolescent Health and Medicine (SAHM) offers recommendations to advocate for and protect adolescent confidentiality, and assist institutions and practices in meeting the information-sharing requirements.

The authors say sharing health information with patients and families allows for improved medical care, but privacy remains a concern.

“We believe it is equally important to recognize the right of adolescent minors to access confidential care, which is protected to some degree in every U.S. state. … As experts in the care of adolescents, NASPAG and SAHM are in a unique position to inform institutional policies around release of information for this population,” they write in “NASPAG/SAHM Statement: The 21st Century Cures Act and Adolescent Confidentiality.”

Exceptions, legal requirements

Encoded in the federal rule is a focus on prohibiting what could be interpreted as information blocking, unless required by law or if it falls under specific exceptions. Two exceptions are relevant to adolescents: “preventing harm” and “privacy.”

When implementing the privacy exception and developing institutional policies, an understanding of federal and state privacy laws is essential.

“The key part is knowing the protections that the adolescents have in terms of the rights of confidentiality — and your state and federal laws — and advocating for them,” said Elizabeth M. Alderman, M.D., FSAHM, FAAP, chair of the AAP Committee on Adolescence and one of the statement’s expert reviewers.

Approach to information release

The final rule also addresses information-sharing for teens and their proxies (typically parents or guardians). Proxy access to nonprotected medical information can be crucial, for example, in the care of teens with complex health issues.

“We encourage adolescents to include parents and guardians even in their reproductive health care and certainly mental health or substance abuse care,” Dr. Alderman noted, “but they are entitled to confidentiality based on state or federal laws. …It’s still mandatory for parents and guardians to be involved with routine health care — things that don’t fit into those other categories — especially for an adolescent with a chronic illness, and even for preventive care.”

Requirements for implementation

Two elements need to be in place for appropriate information release to adolescents and/or their proxies:

  • Both the adolescent minor and proxy need access to the EHR if the goal is to share all information, even if segmented. Different types of information are released to adolescents and their proxies, so it is critical to ensure that the account is accurately linked to the correct user.
  • A system needs to reliably parse out protected from general clinical information.

Even with accurate documentation by clinicians, there are multiple ways protected information might enter a clinical note or patient portal (e.g., via medication lists, laboratory values, problem lists or after-visit summaries).

While clinicians need to be educated about appropriate documentation, the statement says systemic “guardrails” also should be in place to reduce clinician burden. Many of these granular filters will need to be provided at the EHR vendor level, but this infrastructure is not yet available.

“Until the system functionality exists to reliably exclude protected information from being shared, institutions should advocate for methods to release information (e.g., through medical records or other means) that preserve the confidentiality of adolescents’ health information,” the statement concludes.

Pediatric health care providers need to work with their health informatics team and legal counsel as recommended in the statement, Dr. Alderman said.

“It takes a village to get this correct and serve the intent of the 21st Century Cures Act while protecting adolescent confidentiality,” she said.


The statement also offers the following guidance:

  • Serve as a leader in providing institutional and provider education regarding confidentiality rights for minors in your state.
  • Advocate for information access and record release policies that incorporate adolescent confidentiality protections.
  • Consider separate and differential portal account access for the adolescent minor and proxy.
  • Advocate for a confidential note type or ability to designate notes as confidential to allow segmented access to health information within the EHR.
  • Create educational materials for patients and families about teen confidentiality and information access within the EHR.
  • Develop a practice workflow for staff to ensure such confidentiality is maintained.
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