The 2018 establishment of a national expert panel for patients with serious life-threatening disease in Norway

Abstract

The discussion on priority setting in Norwegian healthcare has resulted in several white papers and the establishment of a Council for priority setting from 2007−2017. In 2009 the Council discussed and proposed a system for renewed evaluation by an expert panel for cancer patients, as was in place in Denmark. However, the Directorate of Health found that patients already had the right of second opinion, and thus did not need a new expert panel like the one proposed. The case was discussed several times in the Council, coupled with the discussion on the inequity for patients to take part in studies of emerging treatments. This resulted in 2015 in a public website for patients with information on ongoing clinical trials open for inclusion, but no solution regarding the expert panel. A journalist in a national newspaper published a series of articles in the summer of 2017 on the topic. This was close to the election for Parliament, and the politicians got interested; first the opposition, then the current Minister of Health and Care services. The decision was made in August 2017 to establish such an expert panel for renewed evaluation for patients with serious lifeshortening disease Also, the information for patients on ongoing trials should be more complete and accessible. The Regional health authorities implemented the policy decision, and the expert panel was in place November 1st 2018.