Ukom (Norway)
Ukom (the Norwegian Healthcare Investigation Board) is Norway’s independent investigation commission for healthcare. It investigates serious incidents and other serious situations to improve patient safety and makes recommendations. It is a different body from the supervisory authority Helsetilsynet.
The main article on this subject is Gender care in Norway.
The report
On 9 March 2023, Ukom published the report Pasientsikkerhet for barn og unge med kjønnsinkongruens on patient safety for children and adolescents with gender incongruence. The chapters cover topics including the development of the national guideline, differences in practice and expertise, insufficient knowledge, and the debate climate.
Why it is included on this list
Ukom concluded that knowledge about the treatment of minors is insufficient and recommended revising the national guideline. The report’s place in international developments is shown in the timeline of the Ukom report. The report is regarded as one of the Scandinavian evaluations that called for greater caution. The link leads to the report summary. See policy by country and young people.
Establishment and working methods
Ukom is based on a law adopted by the Norwegian parliament on 1 June 2017. The commission has been handling reports since 1 May 2019 and is based in Stavanger. Pål Iden has been its director since it opened. Anyone can submit a report: patients, relatives, and healthcare professionals. Ukom does not assess whether a treatment was lawful and does not assign blame. Its aim is to understand what happened and how to prevent it from happening again. By March 2021, the commission had received approximately 1,800 reports.
Findings
The investigation was prompted by reports from relatives who had questions about patient safety. Government agencies, healthcare professionals, and patient organisations had also raised concerns. Ukom found that the scientific basis for hormonal and surgical treatment is incomplete, particularly regarding the long-term consequences for young people. There is a lack of knowledge about the treatment of non-binary gender incongruence. According to Ukom, the national guideline focuses mainly on organisation and rights and does not set clear requirements for prior assessment or medical indication. There are major regional differences in expertise and availability, creating a risk of both undertreatment and overtreatment.
Recommendations
Ukom advised the Ministry of Health and Care Services to instruct the Directorate of Health, Helsedirektoratet, to revise the guideline on the basis of a systematic review of the evidence. The ministry should also consider establishing a national quality registry. The third recommendation was to classify puberty blockers and hormonal and surgical treatment for children and adolescents as investigational treatment. Ukom makes recommendations; the decision rests with the government. Sweden’s counterpart on this list is Socialstyrelsen; for Denmark, see the entry on Sundhedsstyrelsen.