Logo: to the web site of Uppsala University

uu.sePublications from Uppsala University
Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Views, Use, and Experiences of Web-Based Access to Pediatric Electronic Health Records for Children, Adolescents, and Parents: Scoping Review
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health. (e-hälsa och hälsodata)ORCID iD: 0000-0003-2835-0259
Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, US.ORCID iD: 0000-0002-0205-1165
Show others and affiliations
2022 (English)In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 24, no 11, article id e40328Article, review/survey (Refereed) Published
Abstract [en]

Background: Ongoing efforts worldwide to provide patients with patient-accessible electronic health records (PAEHRs) have led to variability in adolescent and parental access across providers, regions, and countries. There is no compilation of evidence to guide policy decisions in matters such as access age and the extent of parent proxy access. In this paper, we outline our scoping review of different stakeholders’ (including but not limited to end users) views, use, and experiences pertaining to web-based access to electronic health records (EHRs) by children, adolescents, and parents. Objective: The aim of this study was to identify, categorize, and summarize knowledge about different stakeholders’ (eg, children and adolescents, parents, health care professionals [HCPs], policy makers, and designers of patient portals or PAEHRs) views, use, and experiences of EHR access for children, adolescents, and parents. Methods: A scoping review was conducted according to the Arksey and O’Malley framework. A literature search identified eligible papers that focused on EHR access for children, adolescents, and parents that were published between 2007 and 2021. A number of databases were used to search for literature (PubMed, CINAHL, and PsycINFO). Results: The approach resulted in 4817 identified articles and 74 (1.54%) included articles. The papers were predominantly viewpoints based in the United States, and the number of studies on parents was larger than that on adolescents and HCPs combined. First, adolescents and parents without access anticipated low literacy and confidentiality issues; however, adolescents and parents who had accessed their records did not report such concerns. Second, the main issue for HCPs was maintaining adolescent confidentiality. This remained an issue after using PAEHRs for parents, HCPs, and other stakeholders but was not an experienced issue for adolescents. Third, the viewpoints of other stakeholders provided a number of suggestions to mitigate issues. Finally, education is needed for adolescents, parents, and HCPs. Conclusions: There is limited research on pediatric PAEHRs, particularly outside the United States, and on adolescents’ experiences with web-based access to their records. These findings could inform the design and implementation of future regulations regarding access to PAEHRs. Further examination is warranted on the experiences of adolescents, parents, and HCPs to improve usability and utility, inform universal principles reducing the current arbitrariness in the child’s age for own and parental access to EHRs among providers worldwide, and ensure that portals are equipped to safely and appropriately manage a wide variety of patient circumstances. International Registered Report Identifier (IRRID): RR2-10.2196/36158

Place, publisher, year, edition, pages
JMIR Publications Inc. JMIR Publications, 2022. Vol. 24, no 11, article id e40328
Keywords [en]
electronic health record, patient-accessible electronic health record, adolescents, parents, children, patient experience, patient portal, electronic portal, review, scoping review, youth, patient perspective, user experience, patient access, mobile phone
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Research subject
Medical Informatics
Identifiers
URN: urn:nbn:se:uu:diva-488991DOI: 10.2196/40328ISI: 000964629000002PubMedID: 36413382OAI: oai:DiVA.org:uu-488991DiVA, id: diva2:1713383
Projects
NORDeHEALTH
Funder
NordForsk, 100477Available from: 2022-11-25 Created: 2022-11-25 Last updated: 2024-12-03Bibliographically approved
In thesis
1. A growing concern: Online access to minors’ health records
Open this publication in new window or tab >>A growing concern: Online access to minors’ health records
2025 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Healthcare worldwide is undergoing a transition where patients are increasingly granted access to their electronic health records (EHRs). However, online record access (ORA) for vulnerable groups like children and adolescents remains a topic of active debate. Minors’ experiences of patient-accessible electronic health records (PAEHRs) and related ethical questions remain underexplored.

The thesis aim was to explore stakeholder experiences of online access to minors’ EHRs, through six papers: 1) a case study comparing minors’ and guardian use of PAEHRs in Sweden and Finland and the use of country-specific access control practices; 2) a literature review summarising knowledge about stakeholder views and experiences on ORA for minors and parents; 3-4) two survey studies examining Swedish adolescents’ reasons for reading EHRs, utility, the link between use frequency and encouragement, as well as views on EHR security and privacy, attitudes toward information-sharing, and definitions of sensitive information; and 5-6) two mixed-methods studies exploring the views, awareness and benefits and risks with respect to ORA regulations among Swedish adolescents with serious health issues, their parents, and paediatric oncology HCPs. Findings were analysed using a framework of biomedical ethical principles.

Adolescents in Finland, who receive ORA earlier, showed higher PAEHR use than their Swedish counterparts. In Sweden, few applications for extended access were found. Most prior work was US-based that left minors’ experiences, especially beyond chronic illness, largely underexplored. Swedish adolescent portal users viewed information as useful and higher use was related to HCP encouragement. Although security was rated highly, many wished to manage who could access their EHRs. Mental healthcare was the most cited as sensitive. Adolescents with serious health issues, their parents, and oncology HCPs criticised the current gap in ORA during adolescence. Parents were concerned about early adolescent ORA, while HCPs worried about the impact of parental ORA on EHR quality, and lacked knowledge of access extension.

In conclusion, while ORA showed potential for engaging adolescents in their care early and facilitating parental support, risks remain for EHR quality. Education and dialogue among stakeholders, along with addressing HCP concerns, are essential efforts to make ORA an effective tool for enhancing adolescent health outcomes.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2025. p. 100
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 2107
Keywords
Online record access, open notes, patient experiences, adolescents, parents, healthcare professionals, paediatrics, oncology, survey, mixed-methods, scoping review
National Category
Health Sciences
Research subject
Medical Science
Identifiers
urn:nbn:se:uu:diva-542493 (URN)978-91-513-2308-4 (ISBN)
Public defence
2025-01-17, Humanistiska teatern, Engelska Parken, Thunbergsvägen 3C, Uppsala, 13:15 (English)
Opponent
Supervisors
Projects
NORDeHEALTH
Funder
NordForsk, 100477Forte, Swedish Research Council for Health, Working Life and Welfare, 2020-01229
Available from: 2024-12-12 Created: 2024-11-19 Last updated: 2024-12-12

Open Access in DiVA

fulltext(1242 kB)193 downloads
File information
File name FULLTEXT01.pdfFile size 1242 kBChecksum SHA-512
74d0d88d67d39f9a9019bde854467b2cf3776e81d212abdf1a1fbeee5e380feee4c7332850edb7bd14d9eea2d8b4e967177e8921baeed734554b30104f93e050
Type fulltextMimetype application/pdf

Other links

Publisher's full textPubMedhttp://www.ncbi.nlm.nih.gov/pubmed/36413382

Authority records

Hagström, JosefinBlease, CharlotteHägglund, Maria

Search in DiVA

By author/editor
Hagström, JosefinBlease, CharlotteHägglund, Maria
By organisation
Healthcare Sciences and e-HealthDepartment of Women's and Children's Health
In the same journal
Journal of Medical Internet Research
Health Care Service and Management, Health Policy and Services and Health Economy

Search outside of DiVA

GoogleGoogle Scholar
Total: 193 downloads
The number of downloads is the sum of all downloads of full texts. It may include eg previous versions that are now no longer available

doi
pubmed
urn-nbn

Altmetric score

doi
pubmed
urn-nbn
Total: 160 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf