Pediatric oncology healthcare professionals’ attitudes to and awareness of regulations for minors’ and guardians’ online record access: A mixed-methods study in Sweden

Abstract

Background: Healthcare providers and policymakers worldwide differ in their provision of access to adolescent patients’ electronic health records (EHR). The regulatory framework in Sweden restricting both guardians’ and adolescents’ online record access (ORA) has during recent years received criticism. The aim was to quantitatively and qualitatively, explore attitudes about ORA and perceptions about ORA regulations among pediatric oncology healthcare professionals (HCPs) in Sweden. Methods: A convergent mixed-methods design (QUAL, quan) was used, consisting of a survey study (N=95) and semi-structured individual interviews (N=13). Physicians and nurses in pediatric oncology were recruited in clinics face-to-face or via staff e-mail. Descriptive statistics were used to present quantitative survey results. Interviews were recorded, transcribed, and analysed using content analysis. Results: Participants were critical of the access gap but lacked knowledge about access extensions, with more than 60% unaware of application procedures. Qualitative analysis resulted five themes of benefits (Improving adolescents' and parents' emotional state, Facilitated parental care management, Empowering adolescents, Improving partnership and communication and Enhanced documentation accuracy) and five themes of downsides (Increased emotional distress and confusion, Decreased documentation quality and accuracy, Increased workload, Threatened confidentiality, and Technical portal limitations). HCPs’ views on regulations were categorized into five themes: Uncertainty, Adolescents differ, Balancing parental support and adolescent privacy, “I understand why access is restricted, but…”, and Regulatory changes. Conclusions: Most pediatric oncology HCPs in this study were critical about ORA restrictions during adolescence, recognizing benefits primarily of parental access. Perceived benefits of enhanced parental support and adolescent empowerment conflicted with perceived risks of confidentiality and emotional distress in adolescents and parents from accessing unexplained results. While ORA has potential to improve partnerships in adolescent healthcare, information, guidance and resources for HCPs are needed to ensure patient safety and quality of documentation. Trial registration: Not applicable.