How does it work in other countries?
Through the collaboration with other European authorities and organisations, the Norwegian Medicines Agency and the Norwegian Institute of Public Health are well acquainted with the systems developed to involve patients, such as the National Institute for Health and Care Excellence (NICE) in England and the European Network for Health Technology Assessment (EUnetHTA) (6, 7). There are also resources, such as the European Patients' Academy on Therapeutic Innovation (EUPATI) etc. (8). Patient involvement is systematic in a number of countries, e.g. England, Germany, the Netherlands, France, Canada and Scotland (9–14). Common to all of these is that the patient is systematically included throughout the entire process, from technology notification, through the health technology assessment phase, all the way until the decision is made.
Common to all of these is that the patient is systematically included throughout the entire process
Based on our observations of other countries, we believe that Norwegian patient organisations should demand that Nye metoder facilitate patient involvement without delay. In the Norwegian context, this could entail, for example, establishing clear timelines, including advance notification of deadlines. Notifications and patient involvement invitations could be sent out at the same time as the Ordering Forum orders and initiates a technology assessment. Nye metoder should establish a clear point of patient contact, with responsibility for notification, collection of patient input and ensuring that processes are straightforward and efficient.
Patient organisations would need to appoint a participant. This may be a challenge in the case of rare diseases, but other countries solve this by appointing representatives from broader categories of diseases. Patient input is provided via a form in which they are asked about the burden of disease for themselves and their families, the treatment burden and their expectations for new treatment. These forms are virtually the same in all countries, and include guidance on how to complete them.
We consider these forms to be well-designed, and before being introduced in Norway all they would require is a translation (6–8, 11, 13, 14). We believe the forms are more or less a ready-made solution to adopting the system in Norway. The goal is for the patient input to be included in the Norwegian Medicines Agency's technology assessment report, and for the Decision Forum to describe how the patient input is used in the decision-making.