NASPAG/SAHM Statement: The 21st Century Cures Act and Adolescent Confidentiality

Carlson, Jennifer; Goldstein, Rachel; Hoover, Kim; Tyson, Nichole

doi:10.1016/j.jadohealth.2020.10.020

Cited by 34 publications

(23 citation statements)

References 3 publications

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“…Pediatric institutions often rely on separate adolescent portal accounts with differential information access for this purpose, as recommended by several national organizations. 20 , 21 , 22 Our study suggests that this practice may be insufficient to fully protect adolescent confidentiality. We hypothesize several possible reasons for guardian access of adolescent portal accounts: (1) institutional workflow issues, including errors during portal sign-up 23 ; (2) misunderstanding of portal account design by adolescents and their guardians; (3) adolescents voluntarily sharing their portal access; and (4) guardians coercively or surreptitiously accessing the adolescent’s account.…”

Section: Discussionmentioning

confidence: 82%

“…Compliance with federal regulations, such as the 21st Century Cures Act, and state-specific consent and confidentiality laws for adolescents requires a reliable mechanism to share protected health information with adolescents without guardian knowledge. Pediatric institutions often rely on separate adolescent portal accounts with differential information access for this purpose, as recommended by several national organizations . Our study suggests that this practice may be insufficient to fully protect adolescent confidentiality.…”

Section: Discussionmentioning

confidence: 93%

See 1 more Smart Citation

Assessment of Prevalence of Adolescent Patient Portal Account Access by Guardians

Yang

Parker

et al. 2021

JAMA Netw Open

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Key Points Question How frequently are adolescent patient portal accounts accessed by guardians? Findings In this cross-sectional study including 3429 adolescent accounts across 3 academic institutions, analysis of portal messages found that more than half of adolescent patient portal accounts with outbound messages were accessed by guardians. The percentage of accessed accounts was greater in children aged 13 to 14 years vs those aged 17 to 18 years. Meaning These findings may be useful in guiding health system approaches to protecting adolescent confidentiality when sharing health data via patient portals.

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Section: Discussionmentioning

confidence: 82%

Section: Discussionmentioning

confidence: 93%

Assessment of Prevalence of Adolescent Patient Portal Account Access by Guardians

Yang

Parker

et al. 2021

JAMA Netw Open

View full text Add to dashboard Cite

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“…Prior to the Information Blocking Provision, pediatric institutions participating in the OpenNotes movement had addressed the concern for violating confidentiality and damaging relationships by blocking all clinical notes from several clinics including adolescent, gynecology, psychiatry, substance abuse, and the child protection team [ 29 ]. Although the Cures Act Final Rule explicitly states that maintaining confidentiality and protecting relationships is not sufficient to prevent the release of sensitive information, the effects of releasing this information on patients, their parents or legal representatives, and the patient–provider relationship cannot be underestimated and are concerning to adolescent medicine providers and other health care providers who care for youth [ 30 ].…”

Section: Limitations To the Information Blocking Provision: Multiuser...mentioning

confidence: 99%

The 21st Century Cures Act and Multiuser Electronic Health Record Access: Potential Pitfalls of Information Release

Arvisais-Anhalt¹,

Lau²,

Lehmann³

et al. 2022

J Med Internet Res

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Although the Office of The National Coordinator for Health Information Technology’s (ONC) Information Blocking Provision in the Cures Act Final Rule is an important step forward in providing patients free and unfettered access to their electronic health information (EHI), in the contexts of multiuser electronic health record (EHR) access and proxy access, concerns on the potential for harm in adolescent care contexts exist. We describe how the provision could erode patients’ (both adolescent and older patients alike) trust and willingness to seek care. The rule’s preventing harm exception does not apply to situations where the patient is a minor and the health care provider wishes to restrict a parent’s or guardian’s access to the minor’s EHI to avoid violating the minor’s confidentiality and potentially harming patient-clinician trust. This may violate previously developed government principles in the design and implementation of EHRs for pediatric care. Creating legally acceptable workarounds by means such as duplicate “shadow charting” will be burdensome (and prohibitive) for health care providers. Under the privacy exception, patients have the opportunity to request information to not be shared; however, depending on institutional practices, providers and patients may have limited awareness of this exception. Notably, the privacy exception states that providers cannot “improperly encourage or induce a patient’s request to block information.” Fearing being found in violation of the information blocking provisions, providers may feel that they are unable to guide patients navigating the release of their EHI in the multiuser or proxy access setting. ONC should provide more detailed guidance on their website and targeted outreach to providers and their specialty organizations that care for adolescents and other individuals affected by the Cures Act, and researchers should carefully monitor charting habits in these multiuser or proxy access situations.

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“…4 The Society of Adolescent Health and Medicine and the North American Society for Pediatric and Adolescent Gynecology support improved access for adolescents to their own health information. 5 6 Note sharing can also improve family members' abilities to assist in the care process, ensure continuity between providers, identify errors, and promote advocacy. 7 8 9 10 OpenNotes may be especially important for engaging people from some racial and ethnic minority groups, as well as less educated patients.…”

Section: Background and Significancementioning

confidence: 99%

Lessons Learned from OpenNotes Learning Mode and Subsequent Implementation across a Pediatric Health System

et al. 2022

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Background The 21st Century Cures Act has accelerated adoption of OpenNotes, providing new opportunities for patient and family engagement in their care. However, these regulations present new challenges, particularly for pediatric health systems aiming to improve information sharing while minimizing risks associated with adolescent confidentiality and safety. Objective Describe lessons learned preparing for OpenNotes across a pediatric health system during a 4-month trial period (referred to as “Learning Mode”) in which clinical notes were not shared by default but decision support was present describing the upcoming change and physicians could request feedback on complex cases from a multidisciplinary team. Methods During Learning Mode (December 3, 2020–March 9, 2021), implementation included (1) educational text at the top of commonly used note types indicating that notes would soon be shared and providing guidance, (2) a new confidential note type, and (3) a mechanism for physicians to elicit feedback from a multidisciplinary OpenNotes working group for complex cases with questions related to OpenNotes. The working group reviewed lessons learned from this period, as well as implementation of OpenNotes from March 10, 2021 to June 30, 2021. Results During Learning Mode, 779 confidential notes were written across the system. The working group provided feedback on 14 complex cases and also reviewed 7 randomly selected confidential notes. The proportion of physician notes shared with patients increased from 1.3% to 88.4% after default sharing of notes to the patient portal. Key lessons learned included (1) sensitive information was often present in autopopulated elements, differential diagnoses, and supervising physician note attestations; and (2) incorrect reasons were often selected by clinicians for withholding notes but this accuracy improved with new designs. Conclusion While OpenNotes provides an unprecedented opportunity to engage pediatric patients and their families, targeted education and electronic health record designs are needed to mitigate potential harms of inappropriate disclosures.

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NASPAG/SAHM Statement: The 21st Century Cures Act and Adolescent Confidentiality

Cited by 34 publications

References 3 publications

Assessment of Prevalence of Adolescent Patient Portal Account Access by Guardians

Assessment of Prevalence of Adolescent Patient Portal Account Access by Guardians

The 21st Century Cures Act and Multiuser Electronic Health Record Access: Potential Pitfalls of Information Release

Lessons Learned from OpenNotes Learning Mode and Subsequent Implementation across a Pediatric Health System

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