On May 26th this year, I (Josefin Hagström) travelled to Nice on the French Riviera with my supervisor Maria Hägglund and three other doctoral students (Annika Bärkås, Irene Muli, and Lovisa Hagstedt Jäderlund), to attend the 32nd Medical Informatics Europe Conference (MIE2022). The conference was arranged by the European Federation for Medical Informatics (EFMI).
At the conference, I presented my paper “Minor and Parental Access to Electronic Health Records: Differences Across Four Countries”, where we compared how Sweden, Norway, Finland, and Estonia have implemented access for parents, children, and adolescents. In the NORDeHEALTH project, we had conducted a sociotechnical analysis based on a framework designed for healthcare systems (Sittig and Singh, 2010). Survey questions were designed in digital workshops, and this study included seven of the questions.
We found that Sweden and Norway appeared to be different from Finland and Estonia. Age limits for parental loss of access were lower in Sweden (age 13) and Norway (age 12), than in Finland and Estonia (age 18). In Sweden, parents and adolescents were able to apply for access outside of regulation. The age of obtaining EHR self-access was the same in Sweden and Norway (age 16) while by contrast in Finland and Estonia, there was no lower age for when the minor obtained access to their EHR. None of the studied countries exempted any potentially sensitive health information by default from parent access.
To indulge the conference audience with some attractive visual aid, I provided a graph to facilitate an overview of these findings.
These approaches lead to some unique issues:
- We are seeing an “access gap” in both Sweden and Norway, where by default neither parent nor adolescent has access to their records online when the child is 13-15 years old. It is possible in Sweden to apply for for extended access, but the procedure requires time, effort, and knowledge.
- In Finland, a healthcare professional has to subjectively judge whether the child has decision-making capacity to provide consent or not.
- In Estonia, parents have online access to their child’s records until adulthood by default. Adolescents aged 14 or older are able to restrict the parent’s (and doctor’s) access but this requires agency on the part of the adolescent, and it is uncertain to what extent this is being used.
I concluded that there is need for further research exploring the stakeholders’ (especially parents’ and adolescents’) experiences of the various approaches of PAEHR implementation that are being adopted in different countries. On this, I reported on our ongoing work within work package 4C in the NORDeHEALTH project, which includes a mixed-methods study in oncology, a scoping review, and a national patient survey conducted in the mentioned countries (Sweden, Norway, Finland, Estonia).
My 10-minute-long presentation was followed by five minutes of questions. The audience was curious about the similarities between Sweden and Norway, as well as to what extent adolescents apply for earlier access and use their access at 16 years of age. I was happy to respond that we are currently planning a study where this is explored further, also in relation to the situation in Finland.
Apart from my own presentation, I was inspired by many interesting talks, posters and workshops, participated in networking sessions, and attended the congress dinner on Sunday night. Overall, I had a great experience at MIE and hope to be able to attend the next MIE conference!
/Josefin Hagström, PhD student