JMIR Publications

ABSTRACT

Background:

Ongoing efforts worldwide to provide patients with patient-accessible electronic health records (PAEHR) 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 ages and extent of parent proxy access. In this paper, we outline our scoping review of different stakeholders’ (including but not limited to end-users) perspectives on use, opinions, and experiences pertaining to online access to electronic health records by parents, children, and adolescents.

Objective:

To identify, categorize and summarize knowledge about different stakeholders (e.g. children/adolescents, parents, healthcare professionals (HCPs), policy makers, and designers of patient portals or PAEHRs) use and experiences of EHR access for children, parents and adolescents.x

Methods:

A scoping review was conducted according to the Arksey and O’Malley 1 framework. A literature search identified eligible papers that focused on electronic health record access for children, adolescents, and parents, 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 included articles. The papers were predominantly viewpoints based in the US, and the number of studies of parents was larger than that of adolescents and HCPs combined. Both adolescents and parents with and without access were examined, where adolescents and parents without access anticipated low literacy and confidentiality issues, however did not report such concerns after being given access. On the other hand, adolescent confidentiality remained an issue for HCPs after experiencing PAEHRs, and most viewpoint papers provided recommendations on implementation in regards to this.

Conclusions:

There is limited research on pediatric PAEHRs, particularly regarding adolescents’ experiences with online access to their records. Findings could inform the design and implementation of future regulations around access to patient-accessible electronic health records. Further examination is warranted on experiences of adolescents, parents, and HCPs to improve usability and utility, inform universal principles reducing the current abritrariness in the child’s age for own and parental access to EHRs among providers worldwide, and ensure portals are equipped to safely and appropriately manage a wide variety of patient circumstances.