Expert Panel Advice Ignored by Hospitals, Raising Concerns for Seriously Ill Patients

The expert panel gives advice on treatment for seriously ill patients. Now they register that fewer and fewer hospitals follow their advice.

190 seriously ill cancer patients were given a new assessment of their treatment options by National Expert Panel National Expert Panel The members of the Expert Panel are medical specialists with extensive clinical and research experience and with international networks. The expert panel consists of nine regular doctors, most of whom are oncologists.last year.

The expert panel assesses whether there are other current treatment methods for patients with incurable cancer in Norway or abroad.

Aftenposten recently wrote about the cancer patient Lars. He had a very good effect from cancer treatment abroad. The expert panel recommended that he should be covered for further treatment, but the Foreign Office at Oslo University Hospital said no. The case has been sent to the Complaints Board for Foreign Affairs.

The Cancer Society, the Expert Panel and Lars’ treating doctor believe it is worrisome that hospitals do not follow the advice they are given. They believe it leads to discrimination.

Different decisions spring and autumn

The expert panel has only an advisory role and no decision-making authority. It is up to the individual healthcare provider whether the advice is followed.

• In 2022, the panel 19 advised that patients could participate in clinical studies in Norway. 10 of the advice were not followed.
• Four patients were recommended to participate in studies abroad. For three of them, the advice was not followed.
• For experimental treatment outside studies (so-called off label), 23 pieces of advice were given on treatment. 10 hospitals followed the advice, in 8 cases there was a refusal. In 5 cases, the treatment was no longer relevant.

According to manager Halfdan Sørbye, last autumn there was an increase in the number of cases where the health institutions did not follow the Expert Panel’s advice. There were more refusals in the last half than in the first half of the year.

– At the same hospital, one patient was accepted in the spring, while a patient with a similar condition was refused in the late autumn, he says.

– I think it is tight hospital finances that often determine these refusals. The cost/benefit accounting has become even stricter, says Sørbye.

Discusses putting himself down

– We who are permanent members of the Expert Panel have regularly discussed whether it makes sense to continue if our advice is largely not followed by the health institutions, says Sørbye.

The Norwegian Cancer Society was already concerned when the Expert Panel was established that the advice would not be followed.

– When even the leader is now unsure whether the Expert Panel has the right to life, we depend on the politicians to wake up, says general secretary Ingrid Stenstadvold Ross.

– It is completely hair-raising to see that some hospitals now treat the same patients differently in the spring and in the autumn, because they emphasize economics more heavily in the autumn.

– For the patients, it will then be completely “bingo” if you end up receiving a treatment recommended by the expert panel. We cannot live with that.

Secretary General of the Cancer Society, Ingrid Stenstadvold Ross.

The then Minister of Health, Bent Høie, set up the Expert Panel in 2018. He had a clear expectation that the hospitals would follow the advice of “the country’s foremost professionals” in the Expert Panel.

The panel was created after Aftenposten had written about it despairing cancer patients who traveled abroad because they did not get a renewed assessment in Norway (so-called second opinion).

Frp: – The health institutions should have an obligation to follow the advice

In 2021, the Progress Party put forward a proposal in the Storting that the health organizations should remain obliget to follow the advice of the Expert Panel. The Norwegian Cancer Society supports this view.

After reading the case about Lars, they take up the proposal again.

– When the Expert Panel was established, the premise was that the advice should be followed up by the hospitals, says Bård Hoksrud (Frp).

He believes it is very serious that many of the pieces of advice are not followed up. – I expect the health institutions to take responsibility.

The Conservatives want the hospitals to decide

But Høyre believes the hospitals cannot be obliged to do this.

– It will in effect move the decision-making authority from the health company to the Expert Panel, says health policy spokesperson Tone Wilhelmsen Trøen (H).

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State Secretary Karl Kristian Bekeng (Ap) in the Ministry of Health and Care believes that the experience so far shows that the advice from the Expert Panel is largely followed. He does not support the Frp’s proposal.

He believes that the hospital and attending physician must assess whether the treatment offered to the patient is appropriate. All information must be taken into account. Also the panel’s recommendation, he believes.

– The solution proposed by the FRP means that the responsibility for ensuring that the patient is offered proper health care is transferred from the treating doctor to the Expert Panel.