Swedish Cancer Doctors Want More Patient Access to Medical Records
Most pediatric oncology professionals in Sweden support giving patients and parents broader online access to health records, yet lack knowledge of how to grant it. The disconnect reveals gaps in healthcare policy implementation that could hinder digital transparency efforts across Europe's health systems.
Originaltitel: Pediatric oncology healthcare professionals’ attitudes to and awareness of regulations for minors’ and guardians’ online record access: A mixed-methods study in Sweden
<p><strong>Background</strong></p><p>Healthcare providers and policymakers worldwide differ in their provision of access to adolescentpatients’ electronic health records (EHR). The regulatory framework in Sweden restricting both guardians’ andadolescents’ online record access (ORA) has during recent years received criticism. The aim was to quantitativelyand qualitatively, explore attitudes about ORA and perceptions about ORA regulations among pediatric oncologyhealthcare professionals (HCPs) in Sweden.</p><p><strong>Methods</strong></p><p>A convergent mixed-methods design (QUAL, quan) was used, consisting of a survey study (N = 95) andsemi-structured individual interviews (N = 13). Physicians and nurses in pediatric oncology were recruited in clinicsface-to-face or via staff e-mail. Descriptive statistics were used to present quantitative survey results. Interviews wererecorded, transcribed, and analyzed using content analysis.</p><p><strong>Results</strong></p><p>A majority of participants (72%) were critical of the access restrictions but lacked knowledge about accessextensions, with more than 60% unaware of application procedures. Five themes emerged regarding both perceivedbenefits and risks of ORA. Examples of benefits included adolescent empowerment, parental support, and improvedpartnership; risks included an increased emotional distress and confusion among young patients and their guardians,increased workload for HCPs, and threats to adolescent confidentiality. An additional five identified themes capturedHCPs’ views on regulations and included uncertainty, variation among adolescents, and the need to balance parentalsupport and adolescent privacy.</p><p><strong>Conclusions</strong></p><p>Findings indicate lacking knowledge about ORA regulations and little incentive for HCPs to promoteits use. While risks of ORA were often directly experienced and concerned confidentiality breaches and difficultieswith EHR documentation, benefits tended to be anticipatory and related to patient or parent experiences. Still, HCPsshowed limited support for ORA restrictions during adolescence. To ensure safe and effective ORA use, HCPs needclearer guidance and support.</p>