Abstract
BackgroundThe transition to electronic patient records (EPR) and patient portal use is integral to the digital health revolution. Considering the experiences of children and young people (CYP) in relation to the use of digital health, and those caring for them is vital.AimsA systematic review was conducted between January 2020 – January 2021 to understand the experiences and perceptions of all relevant stakeholders using an EPR system in the paediatric hospital setting, including EPR-linked patient portal use. This formed part of the Going Digital Study, longitudinal research on stakeholder experiences before/after EPR implementation in a paediatric tertiary hospital.MethodsStudies were identified through electronic database and citation searching, following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A systematic search was conducted in EMBASE, EMCARE, MEDLINE, Cochrane Library, Web of Science, Scopus, CINAHL, and PsycINFO electronic databases identifying literature published from 2010. Furthermore, manual searching of conference abstracts and research reports via the Health Research Authority website was conducted. Inclusion criteria were studies reporting on an EPR system in use in hospital settings where child patients (0–17.9 years) were cared for, with/without an EPR-linked patient portal.ResultsThirty-six out of 27377 screened articles were eligible for inclusion. A wide range of benefits, challenges, and information and support needs were identified. Strategies for successful implementation, design improvements, and desirable portal functionality were suggested, together with parental intention to use (or not the portal). Several ethical and legal issues were raised.ConclusionsExperiences of using EPRs and patient portals were wide-ranging with challenges more prevalent soon after implementation. Tailoring information and support to users’ individual needs is complex but is essential to enable prolonged utility, user satisfaction, and engagement, thus promoting effective care provision. Disease-specific portals may increase utility. Taking into consideration CYP’s needs and preferences is essential.