Evidence map›Paper›PMID 36792056›Full record

ArticleApplied clinical informatics2023

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, Natalie Pageler, Tom McPherson, Arash Anoshiravani

Open access · bronzeAbstract readCase Reports
In one paragraph

Article in Applied clinical informatics, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
1.5field-weighted citation impact, top 14% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed, 4 citations in OpenAlex.

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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

4 authors at 2 institutions in 1 country.

Jennifer L CarlsonDepartment of Pediatrics, Stanford University School of Medicine, Stanford, California, United States.
Natalie PagelerDepartment of Pediatrics, Stanford University School of Medicine, Stanford, California, United States.
Tom McPhersonInformation Services, Stanford Medicine Children's Health, Palo Alto, California, United States.
Arash AnoshiravaniDepartment of Pediatrics, Stanford University School of Medicine, Stanford, California, United States.
Stanford University · USStanford Health Care · US

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundFor 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.

objectivesTo 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.

methodsThe 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.

resultsSince 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.

conclusionWith 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.

Indexed as

ConfidentialityElectronic Health RecordsAdolescentChildDocumentationHospitalsHumansQuality ImprovementYoung Adult

Identifiers

PMID36792056
PMCPMC9931492
OpenAlexW4320888830

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.