Assessment of Prevalence of Adolescent Patient Portal Account Access by Guardians

Ip, Wui; Yang, Samuel; Parker, Jacob; Powell, Austin; Xie, James; Morse, Keith; Aikens, Rachael C.; Lee, Jennifer; Gill, Manjot K.; Vundavalli, Shravani; Huang, Yungui; Huang, Jeannie S.; Chen, Jonathan; Hoffman, Jeffrey; Kuelbs, Cynthia L.; Pageler, Natalie M.

doi:10.1001/jamanetworkopen.2021.24733

Cited by 39 publications

(39 citation statements)

References 36 publications

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“…If a parent perceives their adolescent incapable or unwilling to manage their own health care, they may consider it necessary and part of their parental responsibility to find a work-around. A recent UK article published outside the search period indicated that more than half of the messages to adolescents’ accounts were accessed by guardians [ 101 ]. In addition to protecting the adolescent, a few papers stressed the importance of considering caregiver privacy in cases where parents disclose confidential information with regard to the child’s care.…”

Section: Discussionmentioning

confidence: 99%

Views, Use, and Experiences of Web-Based Access to Pediatric Electronic Health Records for Children, Adolescents, and Parents: Scoping Review

Hagström¹,

Blease²,

Haage³

et al. 2022

J Med Internet Res

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Background Ongoing efforts worldwide to provide patients with patient-accessible electronic health records (PAEHRs) have led to variability in adolescent and parental access across providers, regions, and countries. There is no compilation of evidence to guide policy decisions in matters such as access age and the extent of parent proxy access. In this paper, we outline our scoping review of different stakeholders’ (including but not limited to end users) views, use, and experiences pertaining to web-based access to electronic health records (EHRs) by children, adolescents, and parents. Objective The aim of this study was to identify, categorize, and summarize knowledge about different stakeholders’ (eg, children and adolescents, parents, health care professionals [HCPs], policy makers, and designers of patient portals or PAEHRs) views, use, and experiences of EHR access for children, adolescents, and parents. Methods A scoping review was conducted according to the Arksey and O’Malley framework. A literature search identified eligible papers that focused on EHR access for children, adolescents, and parents that were published between 2007 and 2021. A number of databases were used to search for literature (PubMed, CINAHL, and PsycINFO). Results The approach resulted in 4817 identified articles and 74 (1.54%) included articles. The papers were predominantly viewpoints based in the United States, and the number of studies on parents was larger than that on adolescents and HCPs combined. First, adolescents and parents without access anticipated low literacy and confidentiality issues; however, adolescents and parents who had accessed their records did not report such concerns. Second, the main issue for HCPs was maintaining adolescent confidentiality. This remained an issue after using PAEHRs for parents, HCPs, and other stakeholders but was not an experienced issue for adolescents. Third, the viewpoints of other stakeholders provided a number of suggestions to mitigate issues. Finally, education is needed for adolescents, parents, and HCPs. Conclusions There is limited research on pediatric PAEHRs, particularly outside the United States, and on adolescents’ experiences with web-based access to their records. These findings could inform the design and implementation of future regulations regarding access to PAEHRs. Further examination is warranted on the experiences of adolescents, parents, and HCPs to improve usability and utility, inform universal principles reducing the current arbitrariness in the child’s age for own and parental access to EHRs among providers worldwide, and ensure that portals are equipped to safely and appropriately manage a wide variety of patient circumstances. International Registered Report Identifier (IRRID) RR2-10.2196/36158

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Section: Discussionmentioning

confidence: 99%

Views, Use, and Experiences of Web-Based Access to Pediatric Electronic Health Records for Children, Adolescents, and Parents: Scoping Review

Hagström¹,

Blease²,

Haage³

et al. 2022

J Med Internet Res

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“…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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“…One recent study highlighted another area of concern: when guardians access an adolescent patient’s portal account. The study revealed that the estimated prevalence of guardian access could be as high as 76% of adolescent accounts and also showed a relatively low rate of proxy account creation [ 28 ]. When adolescents had their own portal account, proxy accounts for adolescent patients were created in only 0.3%-10% of cases [ 28 ].…”

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

confidence: 99%

“…The study revealed that the estimated prevalence of guardian access could be as high as 76% of adolescent accounts and also showed a relatively low rate of proxy account creation [ 28 ]. When adolescents had their own portal account, proxy accounts for adolescent patients were created in only 0.3%-10% of cases [ 28 ]. The reality that many portal accounts are used and managed by guardians must be taken into consideration for adolescent patients who, in the context of their care setting, may lack the autonomy to prevent their guardians from accessing their personal patient portals.…”

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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Assessment of Prevalence of Adolescent Patient Portal Account Access by Guardians

Cited by 39 publications

References 36 publications

Views, Use, and Experiences of Web-Based Access to Pediatric Electronic Health Records for Children, Adolescents, and Parents: Scoping Review

Views, Use, and Experiences of Web-Based Access to Pediatric Electronic Health Records for Children, Adolescents, and Parents: Scoping Review

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

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

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