New conference paper on minor and parental access to electronic health records in four countries
As I wrote in my previous blog post, I was one of the co-authors of two papers that were submitted to and accepted by the Medical Informatics Europe 2022 conference. This blog post is about the second paper, with the title “Minor and Parental Access to Electronic Health Records: Differences Across Four Countries”. This paper is also based on results from the socio-technical analysis of patient accessible electronic health records (PAEHRs) in the four different countries Estonia, Finland, Norway and Sweden that was performed within the NordForsk-funded eHealth project NORDeHEALTH. Josefin Hagström, a doctoral student from Uppsala University focusing on PAEHR access for children and adolescents as well as their care givers (proxy access), was the main author and the other co-authors were Isabella Scandurra, Charlotte Blease, Barbara Haage, Iiris Hörhammer and Maria Hägglund.
Also in this case we did a cross-country comparison between the four countries, but for this paper the focus was on differences and similarities regarding access policies for children, adolescents and parents. We could identify many differences between the compared countries regarding for example at what age adolescents gain access to their PAEHR and for how many years (counted from a child’s birth) the parents have automatic proxy access to the child’s PAEHR. If we take Sweden as an example, we have quite a complicated situation regarding minor and parental access. Parents in Sweden have automatic proxy access to a child’s PAEHR until the child turn 13. The child then gets automatic access to his/her PAEHR from the age of 16. There is a gap here (13-16) where no one gets (automatic) access to the PAEHR. Both the adolescent and the parents can apply for access during this period, though. The implications of this, as well as of the corresponding policies in the other compared countries, are further discussed in the paper.
This paper has also been published Open Access and can be accessed here.
And here is the abstract:
An increasing number of countries are implementing patient access to electronic health records (EHR). However, EHR access for parents, children and adolescents presents ethical challenges of data integrity, and regulations vary across providers, regions, and countries. In the present study, we compare EHR access policy for parents, children and adolescents in four countries. Documentation from three areas: upper age limit of minors for which parents have access; age at which minors obtain access; and possibilities of access restriction and extension was collected from Sweden, Norway, Finland, and Estonia. Results showed that while all systems provided parents with automatic proxy access, age limits for its expiry differed. Furthermore, a lower minimum age than 18 for adolescent access was present in two of four countries. Differences between countries and potential implications for adolescents are discussed. We conclude that experiences of various approaches should be explored to promote the development of EHR regulations for parents, children and adolescents that increases safety, quality, and equality of care.