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

Xie, James; McPherson, Tom; Powell, Austin; Fong, Paul; Hogan, Adam; Ip, Wui; Morse, Keith; Carlson, Jennifer; Lee, Tzielan; Pageler, Natalie M.

doi:10.1016/j.jadohealth.2021.09.009

Cited by 24 publications

(22 citation statements)

References 15 publications

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“…3,5,6,[20][21][22] With the roll-out of the 21st Century Cures Act Final Rule, national scrutiny has only increased regarding health information sharing for this population. 16,[23][24][25][26][27] This is the first publication to describe an approach to increase health information sharing with families of very complex AYA patients with DC.…”

Section: Discussionmentioning

confidence: 99%

“…Given that this is a single-institution case report, there are several limitations which should be considered when Additionally, there may be variability in technical resources, technical capabilities of the EHR, and interpretation of regulations at health systems that preclude this intervention being implemented elsewhere. 26 Finally, the evaluation of unintended consequences was limited to review of case reports and privacy complaints. Further study is warranted to determine if this intervention would be helpful in other health care settings in different states, to assess whether enhanced communication and education would affect the levels of adoption in various clinical specialties, and to better characterize the effect of this intervention on family engagement and patient outcomes.…”

Section: Discussionmentioning

confidence: 99%

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Providing Online Portal Access to Families of Adolescents and Young Adults with Diminished Capacity at an Academic Children's Hospital: A Case Report

et al. 2023

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Background For caregivers of adolescents and young adults with severe cognitive deficits, or “diminished capacity,” access to the medical record can be critical. However, this can be a challenge when utilizing the electronic health record (EHR) as information is often restricted in order to protect adolescent confidentiality. Having enhanced access for these proxies would be expected to improve engagement with the health system for the families of these medically complex adolescents and young adults. Objectives To describe a process for granting full EHR access to proxies of adolescents with diminished capacity and young adults who are legally conserved while respecting regulations supporting adolescent confidentiality. Methods The first step in this initiative was to define the “diminished capacity” access class for both adolescents and young adults. Once defined, workflows utilizing best practice alerts were developed to support clinicians in providing the appropriate documentation. In addition, processes were developed to minimize the possibility of erroneously activating the diminished capacity access class for any given patient. To enhance activation, a support tool was developed to identify patients who might meet the criteria for diminished capacity proxy access. Finally, outreach and educations were developed for providers and clinics to make them aware of this initiative. Results Since activating this workflow, proxies of 138 adolescents and young adults have been granted the diminished capacity proxy access class. Approximately 54% are between 12 and 17 years with 46% 18 years and older. Proxies for both age groups have engaged with portal functionality at higher rates when compared to institutional rates of use by proxies of the general pediatric population. Conclusion With this quality improvement initiative, we were able to enhance EHR access and engagement of families of some of the most complex adolescent and young adult patients without inadvertently compromising adolescent confidentiality.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Providing Online Portal Access to Families of Adolescents and Young Adults with Diminished Capacity at an Academic Children's Hospital: A Case Report

et al. 2023

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“…Prior studies by Xie et al and Ip et al have used natural language processing algorithms to identify inappropriate health portal access by parents and guardians. 25,26 This occurs when a parent or guardian accesses the health portal with the patient's account instead of a proxy account. In a related study by Lee et al, keyword expansion was used to identify the prevalence of potentially confidential content in adolescent progress notes.…”

Section: Discussionmentioning

confidence: 99%

A Natural Language Processing Model to Identify Confidential Content in Adolescent Clinical Notes

et al. 2023

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Background: The 21st Century Cures Act mandates the immediate, electronic release of health information to patients. However, in the case of adolescents, special consideration is required to ensure that confidentiality is maintained. The detection of confidential content in clinical notes may support operational efforts to preserve adolescent confidentiality while implementing information sharing. Objective: Determine if a natural language processing (NLP) algorithm can identify confidential content in adolescent clinical progress notes. Methods: 1,200 outpatient adolescent progress notes written between 2016 and 2019 were manually annotated to identify confidential content. Labeled sentences from this corpus were featurized and used to train a two-part logistic regression model, which provides both sentence-level and note-level probability estimates that a given text contains confidential content. This model was prospectively validated on a set of 240 progress notes written in May 2022. It was subsequently deployed in a pilot intervention to augment an ongoing operational effort to identify confidential content in progress notes. Note-level probability estimates were used to triage notes for review and sentence-level probability estimates were used to highlight high-risk portions of those notes to aid the manual reviewer. Results: The prevalence of notes containing confidential content was 21% (255/1200) and 22% (53/240) in the train/test and validation cohorts. The ensemble logistic regression model achieved an AUROC of 90% and 88% in the test and validation cohorts. Its use in a pilot intervention identified outlier documentation practices and demonstrated efficiency gains over completely manual note review. Discussion: An NLP algorithm can identify confidential content in progress notes with high accuracy. Its human-in-the-loop deployment in clinical operations augmented an ongoing operational effort to identify confidential content in adolescent progress notes. These findings suggest NLP may be used to support efforts to preserve adolescent confidentiality in the wake of the information blocking mandate.

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“…The "clean-up" phase has been described in our previous publication. 11 Our ongoing monitoring is an extension of our "clean-up" work but focuses on newly created accounts. The current discussion will focus on the project to minimize account errors at the time of account activation.…”

Section: Accepted Manuscriptmentioning

confidence: 99%

Creating a Guardrail System to Ensure Appropriate Activation of Adolescent Portal Accounts

et al. 2023

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Case Presentation: The parent of an adolescent patient noticed an upcoming appointment in the patient’s portal account that should have remained confidential to the parent. As it turned out, this parent was directly accessing their child’s adolescent patient portal account instead of using a proxy account. After investigation of this case, it was found that the adolescent account had been activated with the parent’s demographic information. This case illustrates the challenges of using adult-centric electronic health record (EHR) systems and how our institution addressed the problem of incorrect portal account activations. Background: Confidentiality is fundamental to providing healthcare to adolescents. To comply with the 21st Century Cures Act’s information blocking rules, confidential information must be released to adolescent patients when appropriate while also remaining confidential from their guardians. While complying with this national standard, systems of care must also account for interstate variability in which services allow for confidential adolescent consent. Unfortunately, there are high rates of guardian access to adolescent portal accounts. Therefore, measures must be taken to minimize the risk of inadvertent confidentiality breaches via adolescent patient portals. Solutions and Lessons Learned: Our institution implemented a guardrail system that checks the adolescent patient’s contact information against the contact information of their parent/guardian/guarantor. This guardrail reduced the rate of account activation errors after implementation. However, the guardrail can be bypassed when demographic fields are missing. Thus, ongoing efforts to create pediatric-appropriate demographic fields in the EHR and workflows for registration of proxy accounts in the patient portal are needed.

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

Cited by 24 publications

References 15 publications

Providing Online Portal Access to Families of Adolescents and Young Adults with Diminished Capacity at an Academic Children's Hospital: A Case Report

Providing Online Portal Access to Families of Adolescents and Young Adults with Diminished Capacity at an Academic Children's Hospital: A Case Report

A Natural Language Processing Model to Identify Confidential Content in Adolescent Clinical Notes

Creating a Guardrail System to Ensure Appropriate Activation of Adolescent Portal Accounts

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