A growing concern : Online access to minors’ health records

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.