Confidentiality and Consent in the Care of the Adolescent Patient

Maslyanskaya, Sofya; Alderman, Elizabeth M.

doi:10.1542/pir.2018-0040

Cited by 43 publications

(23 citation statements)

References 17 publications

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“…Individual health systems define different types of portal access, often giving adolescent patients full or limited access [ 31 ]. Under the Health Insurance Portability and Accountability Act, parents and legal guardians are considered personal representatives of patients under 18 years (ie, minors) and are thus afforded proxy access to the patient’s EHI, including access through patient portals [ 16 , 23 , 31 ]. However, a recent work by Ip et al [ 32 ] demonstrated that parents are often active users of adolescent portal accounts, making it even more crucial that note authors recognize sensitive content in their notes and take into consideration who can see what in their patient portal.…”

Section: Discussionmentioning

confidence: 99%

Prevalence of Sensitive Terms in Clinical Notes Using Natural Language Processing Techniques: Observational Study

Lee¹,

Yang²,

Holland-Hall³

et al. 2022

JMIR Med Inform

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Background With the increased sharing of electronic health information as required by the US 21st Century Cures Act, there is an increased risk of breaching patient, parent, or guardian confidentiality. The prevalence of sensitive terms in clinical notes is not known. Objective The aim of this study is to define sensitive terms that represent the documentation of content that may be private and determine the prevalence and characteristics of provider notes that contain sensitive terms. Methods Using keyword expansion, we defined a list of 781 sensitive terms. We searched all provider history and physical, progress, consult, and discharge summary notes for patients aged 0-21 years written between January 1, 2019, and December 31, 2019, for a direct string match of sensitive terms. We calculated the prevalence of notes with sensitive terms and characterized clinical encounters and patient characteristics. Results Sensitive terms were present in notes from every clinical context in all pediatric ages. Terms related to the mental health category were most used overall (254,975/1,338,297, 19.5%), but terms related to substance abuse and reproductive health were most common in patients aged 0-3 years. History and physical notes (19,854/34,771, 57.1%) and ambulatory progress notes (265,302/563,273, 47.1%) were most likely to include sensitive terms. The highest prevalence of notes with sensitive terms was found in pain management (950/1112, 85.4%) and child abuse (1092/1282, 85.2%) clinics. Conclusions Notes containing sensitive terms are not limited to adolescent patients, specific note types, or certain specialties. Recognition of sensitive terms across all ages and clinical settings complicates efforts to protect patient and caregiver privacy in the era of information-blocking regulations.

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Section: Discussionmentioning

confidence: 99%

Prevalence of Sensitive Terms in Clinical Notes Using Natural Language Processing Techniques: Observational Study

Lee¹,

Yang²,

Holland-Hall³

et al. 2022

JMIR Med Inform

View full text Add to dashboard Cite

show abstract

“…Alternatively, the creation of separate portals for the adolescent and their parents to access different PHI can provide confidentiality to adolescents. 48 In a scenario where a child's parents are divorced and the child's stepmother now has access to the genetic test results of the child's biological mother from the child's chart, one likely solution is to only permit disclosure of genetic information to nonbiological parents with the consent of both biological (even if one is not custodial) parents. The risk is that one parent might not consent, and this may compromise the patient's interests.…”

Section: Patients and Familiesmentioning

confidence: 99%

“…66 For systems, however, there are technical challenges of implementing and administering these access controls while balancing the need for clinicians to access the chart for treatment purposes and to avoid delays. Some solutions that can be done at the informational technology/architectural level include creation of variable settings within the EHR that limit or permit the release of information to specific groups of users 48 . "Disclosure filters" at the individual level can allow the individual to consent to the nature and extent of use of data for research purposes.…”

Section: Informaticians and Administratorsmentioning

confidence: 99%

Ethical Considerations on Pediatric Genetic Testing Results in Electronic Health Records

et al. 2020

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Background Advances in technology and access to expanded genetic testing have resulted in more children and adolescents receiving genetic testing for diagnostic and prognostic purposes. With increased adoption of the electronic health record (EHR), genetic testing is increasingly resulted in the EHR. However, this leads to challenges in both storage and disclosure of genetic results, particularly when parental results are combined with child genetic results. Privacy and Ethical Considerations Accidental disclosure and erroneous documentation of genetic results can occur due to the nature of their presentation in the EHR and documentation processes by clinicians. Genetic information is both sensitive and identifying, and requires a considered approach to both timing and extent of disclosure to families and access to clinicians. Methods This article uses an interdisciplinary approach to explore ethical issues surrounding privacy, confidentiality of genetic data, and access to genetic results by health care providers and family members, and provides suggestions in a stakeholder format for best practices on this topic for clinicians and informaticians. Suggestions are made for clinicians on documenting and accessing genetic information in the EHR, and on collaborating with genetics specialists and disclosure of genetic results to families. Additional considerations for families including ethics around results of adolescents and special scenarios for blended families and foster minors are also provided. Finally, administrators and informaticians are provided best practices on both institutional processes and EHR architecture, including security and access control, with emphasis on the minimum necessary paradigm and parent/patient engagement and control of the use and disclosure of data. Conclusion The authors hope that these best practices energize specialty societies to craft practice guidelines on genetic information management in the EHR with interdisciplinary input that addresses all stakeholder needs.

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“…Our institution's online patient portal system provides adolescents (defined at our institution as ages 12e17) and their guardians with electronic access to communicate with their provider, view and schedule appointments, request medication refills, view laboratory test results, and view educational materials. Access to health information and a patient's medical team via a patient portal can promote greater ownership and management of an adolescent's health [7]. However, some of these features can risk breaching adolescent confidentiality.…”

mentioning

confidence: 99%

Ensuring Adolescent Patient Portal Confidentiality in the Age of the Cures Act Final Rule

Xie

McPherson

Powell

et al. 2021

Journal of Adolescent Health

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Confidentiality and Consent in the Care of the Adolescent Patient

Cited by 43 publications

References 17 publications

Prevalence of Sensitive Terms in Clinical Notes Using Natural Language Processing Techniques: Observational Study

Prevalence of Sensitive Terms in Clinical Notes Using Natural Language Processing Techniques: Observational Study

Ethical Considerations on Pediatric Genetic Testing Results in Electronic Health Records

Ensuring Adolescent Patient Portal Confidentiality in the Age of the Cures Act Final Rule

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