A1 Refereed original research article in a scientific journal
Pediatric oncology healthcare professionals’ attitudes to and awareness of regulations for minors’ and guardians’ online record access: a mixed-methods study in Sweden
Authors: Hagström, Josefin; Blease, Charlotte; Harila, Arja; Scandurra, Isabella; Lähteenmäki, Päivi; Hägglund, Maria
Publisher: BioMed Central
Publication year: 2025
Journal: BMC Health Services Research
Article number: 1562
Volume: 25
eISSN: 1472-6963
DOI: https://doi.org/10.1186/s12913-025-13697-3
Publication's open availability at the time of reporting: Open Access
Publication channel's open availability : Open Access publication channel
Web address : https://doi.org/10.1186/s12913-025-13697-3
Self-archived copy’s web address: https://research.utu.fi/converis/portal/detail/Publication/505670646
Self-archived copy's licence: CC BY
Self-archived copy's version: Publisher`s PDF
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.
MethodsA 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 analyzed using content analysis.
ResultsA majority of participants (72%) were critical of the access restrictions but lacked knowledge about access extensions, with more than 60% unaware of application procedures. Five themes emerged regarding both perceived benefits and risks of ORA. Examples of benefits included adolescent empowerment, parental support, and improved partnership; 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 captured HCPs’ views on regulations and included uncertainty, variation among adolescents, and the need to balance parental support and adolescent privacy.
ConclusionsFindings indicate lacking knowledge about ORA regulations and little incentive for HCPs to promote its use. While risks of ORA were often directly experienced and concerned confidentiality breaches and difficulties with EHR documentation, benefits tended to be anticipatory and related to patient or parent experiences. Still, HCPs showed limited support for ORA restrictions during adolescence. To ensure safe and effective ORA use, HCPs need clearer guidance and support.
Downloadable publication This is an electronic reprint of the original article. |
Funding information in the publication:
Open access funding provided by Uppsala University. This study received funding from NordForsk through the funding to Nordic eHealth for Patients: Benchmarking and Developing for the Future, NORDeHEALTH, (Project #100477), the Swedish Research Council for Health, Working Life and Welfare (FORTE) through the funding to Beyond Implementation of eHealth (Project #2020 − 01229).