When patients and relatives are told that there is no more treatment to give, there are many who feel uncertainty, and it is natural to look for other options for treatment.
Norwegian medical specialists are generally up-to-date on treatment and clinical trials, but if it is uncertain whether there are any treatments or trials that may be appropriate for you, an evaluation from the Expert Panel may be of relevance.
The panel will provide a new professional assessment and the certainty that all relevant treatment has been administered or evaluated, and may provide specific advice on additional treatment or clinical trials. Furthermore, the Expert Panel can help patients avoid spending time and money on treatment that is not useful or that could potentially be harmful.
The Expert Panel provides evaluation and gives advice related to the individual patient. They have an advisory role only, with no decision-making authority.
Who is the scheme for?
The Expert Panel scheme is relevant in situations where:
- The person has a critical life-shortening illness.
- All established treatment has been initiated or evaluated.
You can get advice on treatment options and whether it may be appropriate to try new treatment. The Expert Panel consults with the doctor who is responsible for your treatment in the hospital.
All established treatment shall usually be initiated or evaluated before a case is submitted to the Expert Panel. Established treatment is defined as treatment methods that are well documented, originate from national or international guidelines and represent current practice. In certain situations, a specific treatment for a critical life-shortening illness may be considered before any current established treatment is administered.
Experience from similar schemes in Denmark shows that the vast majority of patients covered by the scheme have advanced, incurable cancer. The Expert Panel will also be able to assess patients who suffer from other critical life-shortening illnesses than cancer.
Starting 2022, patiens with ALS (Amyotrophic lateral sclerosis) can also get an assessment from the Expert Panel.
Who can refer patients for assessment?
The attending physician (the doctor administering treatment at the hospital) is authorised, in consultation with the patient, to approach the Expert Panel.
It is important that it is the attending physician who sends the referral to the Expert Panel, as he or she knows your medical history and treatment and can provide all necessary and relevant information to the panel.
Who is the Expert Panel?
The Expert Panel participants are medical specialists with extensive experience of clinical work and research, and with international networks. The expert panel consists of seven permanent oncologists, a molecular pathologist and a neurologist who will give advice in most cases. In addition, 30 professionals from various medical areas will be consulted if necessary.
What can the Expert Panel help with?
The Expert Panel considers and can provide advice on the following:
- Assessment of whether all relevant established treatment has been administered or evaluated.
- Assessment of whether there are appropriate clinical trials for you in Norway or abroad (preferably the Nordic countries).
- Assessment of experimental treatment in Norway outside of clinical trials (off-label treatment).
- Assessment of an offer of experimental treatment that you have acquired yourself.
When a new treatment is assessed in Norway, the organisation in charge of processing and decision-making is the Decision Forum for the National System for Managed Introduction of New Health Technologies within the Specialist Health Service (nyemetoder.no). The purpose of this forum is to ensure for patients that the efficacy and safety of new treatment methods have been assessed. If a decision has been made not to introduce a certain treatment in Norway, the Expert Panel must comply with this. The Expert Panel is not able to make any statements regarding treatment that is being reviewed by the Decision Forum.
Expert Panel processing time
Based on submitted information, the Expert Panel's relevant members will review the inquiry. It normally takes two weeks from the date on which the Expert Panel receives a complete request until a response is sent to the doctor at the hospital. If the panel needs to obtain further information in Norway or abroad, the process may take slightly longer. If more than four weeks pass, the doctor will receive preliminary feedback.
Following Expert Panel advice
The attending physician will assess your clinical condition and decide whether you will be able to withstand the treatment. On the basis of information about the efficacy and side effects of the treatment, you can decide whether you want such treatment.
Advice about treatment from the Expert Panel does not imply that you have the right to receive such treatment or receive public subsidies for such treatment.