ArticleJournal of the American Medical Informatics Association : JAMIA2018
Variability in adolescent portal privacy features: how the unique privacy needs of the adolescent patient create a complex decision-making process.
Article in Journal of the American Medical Informatics Association : JAMIA, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 31 papers.
What it found
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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.
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.
Who cites it
31 citing papers in PubMed.
- Parents' Use of Technologies for Health Management: A Health Literacy Perspective.Academic pediatricsTrial
- Pediatric oncology healthcare professionals' attitudes to and awareness of regulations for minors' and guardians' online record access: a mixed-methods study in Sweden.BMC health services research · 2025Article
- Parental Access to Adolescent Online Healthcare Portals: Benefits, Problems, and Barriers.Applied clinical informatics · 2025Article
- Adolescent and parental proxy online record access: analysis of the empirical evidence based on four bioethical principles.BMC medical ethics · 2025Article
- Perspectives on Swedish Regulations for Online Record Access Among Adolescents With Serious Health Issues and Their Parents: Mixed Methods Study.JMIR pediatrics and parenting · 2025Article
- Development of Recommendations for the Digital Sharing of Notes With Adolescents in Mental Health Care: Delphi Study.JMIR mental health · 2024Article
- The Effect of Using a Client-Accessible Health Record on Perceived Quality of Care: Interview Study Among Parents and Adolescents.Journal of participatory medicine · 2024Article
- Guiding Principles for Adolescent Web-Based Portal Access Policies: Interviews With Informatics Administrators.JMIR pediatrics and parenting · 2024Article
- Variation in pediatric and adolescent electronic health data sharing practices under the 21st Century Cures Act.Journal of the American Medical Informatics Association : JAMIA · 2023Article
- Electronic Health Record Adolescent Confidentiality in a Safety Net Setting.Applied clinical informatics · 2023Article
- Adolescent Perspectives on the Use of Telemedicine for Confidential Health Care: An Exploratory Mixed-Methods Study.The Journal of adolescent health : official publication of the Society for Adolescent Medicine · 2023Article
- Shifting into Action: from Data Segmentation to Equitable Interoperability for Adolescents (and Everyone Else).Applied clinical informatics · 2023Article
- Sharing Clinical Notes while Protecting Adolescent Confidentiality and Maintaining Parental Insight.Applied clinical informatics · 2023Article
- Creating a Guardrail System to Ensure Appropriate Activation of Adolescent Portal Accounts.Applied clinical informatics · 2023Article
- The Prevalence of Confidential Content in Adolescent Progress Notes Prior to the 21st Century Cures Act Information Blocking Mandate.Applied clinical informatics · 2023Article
- Recommendations for the Quality Management of Patient-Generated Health Data in Remote Patient Monitoring: Mixed Methods Study.JMIR mHealth and uHealth · 2023Article
- Providing Online Portal Access to Families of Adolescents and Young Adults with Diminished Capacity at an Academic Children's Hospital: A Case Report.Applied clinical informatics · 2023Article
- Patient Portals to Support Care Partner Engagement in Adolescent and Adult Populations: A Scoping Review.JAMA network open · 2022Article
- Views, Use, and Experiences of Web-Based Access to Pediatric Electronic Health Records for Children, Adolescents, and Parents: Scoping Review.Journal of medical Internet research · 2022Article
- Telehealth experiences of providers and patients who use augmentative and alternative communication.Journal of the American Medical Informatics Association : JAMIA · 2022Article
Corrections and comments
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Authors and funding
4 authors.
Funding
Abstract
Objective: Medical privacy policies, which are clear-cut for adults and young children, become ambiguous during adolescence. Yet medical organizations must establish unambiguous rules about patient and parental access to electronic patient portals. We conducted a national interview study to characterize the diversity in adolescent portal policies across a range of institutions and determine the factors influencing decisions about these policies. Methods: Within a sampling framework that ensured diversity of geography and medical organization type, we used purposive and snowball sampling to identify key informants. Semi-structured interviews were conducted and analyzed with inductive thematic analysis, followed by a member check. Results: We interviewed informants from 25 medical organizations. Policies established different degrees of adolescent access (from none to partial to complete), access ages (from 10 to 18 years), degrees of parental access, and types of information considered sensitive. Federal and state law did not dominate policy decisions. Other factors in the decision process were: technology capabilities; differing patient population needs; resources; community expectations; balance between information access and privacy; balance between promoting autonomy and promoting family shared decision-making; and tension between teen privacy and parental preferences. Some informants believed that clearer standards would simplify policy-making; others worried that standards could restrict high-quality polices. Conclusions: In the absence of universally accepted standards, medical organizations typically undergo an arduous decision-making process to develop teen portal policies, weighing legal, economic, social, clinical, and technological factors. As a result, portal access policies are highly inconsistent across the United States and within individual states.
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What OpenQuestion holds
Registered trials
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.