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Appl Clin Inform 2023; 14(01): 128-133
DOI: 10.1055/s-0043-1760847
Adolescent Privacy and the Electronic Health Record

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

Jennifer L. Carlson
1   Department of Pediatrics, Stanford University School of Medicine, Stanford, California, United States
,
Natalie Pageler
1   Department of Pediatrics, Stanford University School of Medicine, Stanford, California, United States
,
Tom McPherson
2   Information Services, Stanford Medicine Children's Health, Palo Alto, California, United States
,
Arash Anoshiravani
1   Department of Pediatrics, Stanford University School of Medicine, Stanford, California, United States
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Abstract

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.

Keywords

adolescent confidentiality - portal access - diminished capacity - proxy access - electronic health record

Protection of Human and Animal Subjects

The institutional review board (IRB) determined that this project did not meet the definition of human subject research as defined in federal regulations 45 CFR 46.102 or 21 CFR 50.3 and did not require further IRB review.




Publication History

Received: 16 August 2022

Accepted: 16 December 2022

Article published online:
15 February 2023

© 2023. Thieme. All rights reserved.

Georg Thieme Verlag KG
Rüdigerstraße 14, 70469 Stuttgart, Germany

 

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