Evidence map›Paper›PMID 37729944›Full record

ArticleApplied clinical informatics2023

Patient Portal Privacy: Perspectives of Adolescents and Emerging Adults Living with HIV and the Parental/Guardian Role in Supporting Their Care.

Kevon-Mark P Jackman, Elise Tirza Ohene-Kyei, Ashle Barfield, Fopefoluwa Atanda, Raina Smith, Steven Huettner, Allison Agwu, Maria Trent

Abstract read
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 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed
–field-weighted citation impact
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

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3 · Its place in the literature

Who cites it

5 citing papers in PubMed.

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4 · The record

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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

8 authors.

Kevon-Mark P JackmanDepartment of Pediatrics, Division of Adolescent and Young Adult Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland, United States.
Elise Tirza Ohene-KyeiDepartment of Pediatrics, Division of Adolescent and Young Adult Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland, United States.
Ashle BarfieldDepartment of Pediatrics, Division of Adolescent and Young Adult Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland, United States.
Fopefoluwa AtandaDepartment of Biology, School of Computer, Mathematical and Natural Sciences, Morgan State University, Baltimore, Maryland, United States.
Raina SmithDepartment of Pediatrics, Division of Adolescent and Young Adult Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland, United States.
Steven HuettnerDepartment of Pediatrics, Division of Adolescent and Young Adult Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland, United States.
Allison AgwuDivision of Infectious Diseases, Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, Maryland, United States.
Maria TrentDepartment of Pediatrics, Division of Adolescent and Young Adult Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland, United States.

Funding

Technology Based Community Health Nursing to Improve cART Adherence and Virologic Suppression in Youth Living with HIV (TechN 2 CheckIN): A Regional Multi-site StudyR01MD011770 · NIMHD · JOHNS HOPKINS UNIVERSITY · PI AGWU, ALLISON L, TRENT, MARIA E. · 2017 to 2021
$4.0M
Characterizing the role of social, behavioral, and economic stigmas as determinants of HIV and mental health across the USR01NR020437 · NINR · JOHNS HOPKINS UNIVERSITY · PI BARAL, STEFAN DAVID · 2021 to 2025
$3.9M
UCLA Implementation Science and Substance Use Research and Education (ISSURE) ProgramR25DA035692 · NIDA · UNIVERSITY OF CALIFORNIA LOS ANGELES · PI TIMOTHY W FONG, GAIL E. WYATT · 2013 to 2026
$3.9M
NIDA NIH HHS R25 DA035692NIMHD NIH HHS R01 MD011770NINR NIH HHS R01 NR020437
6 · The paper itself

Abstract

backgroundIncreasing the percentage of people living with human immunodeficiency virus (HIV), including youth, who are virally suppressed to 95% is an overall goal of the ending the HIV epidemic initiative. While patient portals have become ubiquitous, questions remain about how best to operationalize parental/guardian access to youth's patient portals in alignment with optimizing HIV care outcomes and patient preferences. This qualitative study focuses on understanding perspectives among youth with HIV (YHIV) about parental access to patient portals.

methodsEligible participants were YHIV aged 13 to 25 years receiving care at an urban academic hospital. Semistructured individual/paired interviews were conducted between May 2022 and March 2023. Participants were asked to discuss thoughts on parental access to patient portals, and roles parents/guardians have in supporting their HIV care. Semistructured interviews were conducted with adolescent and emerging adult health care workers (HCWs) to gain perspectives on YHIV emergent themes. Audio-recorded interviews were transcribed verbatim, and we conducted thematic analysis using an inductive approach to identify codes and themes.

resultsSixteen YHIV and four HCWs participated in interviews. Parental roles in coordinating HIV care ranged from supporting YHIV needs for transportation, acquiring, and taking medications, to not having any role at all. Participants shared heterogeneous perspectives about their openness to share patient portal access with their parents/guardians. Perspectives were not strictly congruent along lines of participant age or parental roles in helping youth to manage HIV care. Sharing passwords emerged both as a pathway that YHIV grant access to their accounts and a source of confusion for clinicians when parents/guardians send messages using their child's account.

conclusionFindings suggest HCWs should initiate conversations with YHIV patients to determine preferences for parental/guardian access to their patient portal, educate on proxy access, and explain the extent of medical information that is shared with proxy accounts, regardless of age and perceived parental involvement in HIV care.

Indexed as

HIV InfectionsPatient PortalsAdolescentAdultChildCommunicationHumansParentsPrivacy

Identifiers

PMID37729944
PMCPMC10511274

What OpenQuestion holds

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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.