Debate report – The right to know? Should information to patients be restricted?

The debate was held at the representation of the Stockholm region in Brussels, on 24 February 2010. Chaired by Phil Hammond, a British doctor and journalist, it explored how to break the deadlock over the latest proposal by the European Commission on the issue. Also discussed were concrete examples of how to provide patients with the most useful and accurate information on their condition and available treatments, in the age of the internet.

The Commission’s proposal for a directive would authorise manufacturers of medicines to post non-promotional information about their products on their websites. The proposal has been criticised for opening the door to direct-to-patients advertising. Furthermore, the proposal is blocked in the Council of ministers, with several national governments refusing to consider it.

The debate started with a view from a patient’s perspective. Jan Geissler, director of the European cancer patient coalition (ECPC), a federation of cancer patient and advocacy groups, who was affected by a rare form of leukaemia, explained how difficult it had been for him to find information about his condition. Having had a rare condition, he sought information through a US website, and had to pretend he was a US citizen. Had he not understood English, he said, he most probably would not have learned about a clinical trial in which he then enrolled, which ultimately saved his life. He wants to make sure that others could also benefit from information. He started to translate the available scientific literature into German and made it available over the internet on a dedicated portal.
Asked about the current Commission proposal, he criticised an approach that singled out industry as the main provider of information, and emphasized the contribution of patient groups to disseminate relevant information. Such groups, he said, were best positioned to ensure a rapid circulation of up-to-date information on various conditions, whereas governmental vetting of information could be slow and bureaucratic.

The next focus of the discussion was the state of the patient-doctor relationship. With patients increasingly active in seeking information on their own conditions, the traditional, top-down relationship that existed in past decades has become outdated. As Phil Hammond pointed out, some patients know more about their conditions than doctors themselves.

Dr Konstanty Radziwill, president of the permanent committee of European doctors (CPME) said that trust was necessary. He stressed that the purpose of any regulation should be to guarantee the quality of the information made available. He emphasised the importance of the patient-doctor relationship, saying that doctors were trained to guide patients through difficult choices, and that they should not let them take the wrong decisions. Information should be checked and approved by an independent authority before it reaches the patient, as he doubted that industry could be trusted to deliver unbiased information. He also stressed that if industry was to change the presentation of information to make it more ‘reader-friendly’, there was a risk of bias.

When asked how appropriate the proposal was to address this situation, Christofer Fjellner, the Swedish centre-right (EPP) MEP responsible for drafting Parliament’s position, pointed out that the Commission proposal did not deserve the treatment it had so far received from member states. He said that the main problem was a problem of trust: public authorities did not trust pharmaceutical companies to provide unbiased information over their own products. But member states should give the proposal a fair chance by at least considering it.
Indeed some member states have refused to consider the proposal, because they fear that it would lead to disguised advertising by pharmaceutical companies. They believe that this would lead to an increase in demand for medicines, and an increased burden on public health systems. A representative of the Swedish government specified that member states were not united in their criticism of the proposal. Not every member state’s hesitancy about the proposal originated in a fear of disguised advertisement: for Nordic governments, he explained, the issue was more linked to the possible incompatibility of the proposal with constitutional guarantees of freedom of information in these countries.

In spite of these difficulties, some member states appear to have found solutions to the information problem. In opening of the debate, Hammond said that he was surprised to see that the EU had not solved the issue yet. The debate in the UK had long moved on since the creation of the UKMi portal, a public website making information on all NHS-approved medicines and treatments available to the public as soon as authorisation has been granted. Per Manell, chief technology officer at LIF, Sweden’s pharmaceutical industry association, gave a presentation of FASS.se, a similar portal in Sweden. The significant difference between the two systems is that FASS.se is run by the industry, under government oversight.

Manell presented figures showing that the introduction of FASS.se, which gives public access to information on non-prescription and prescription drugs alike, did not lead to an explosion in demand for branded medicines. On the contrary, it was followed by a fall in medicine sales. Manell said that there had not been any complaints about the quality of information available on FASS.se. This last point was contested by a representative of consumers, saying that Swedish government websites had up to very recently displayed out of date information on particular treatments, questioning the quality of the government’s oversight.

Fact File

The speakers

Christofer Fjellner MEP

Christofer Fjellner MEP is the European Parliament rapporteur on information to patients.

 

Per Manell

Per Manell is chief technology officer at LIF, the Swedish association of the pharmaceutical industry.

 

Dr Konstanty Radziwill

Dr Konstanty Radziwill is the president of the permanent committee of European doctors (CPME).

 

Jan Geißler

Jan Geißler is the director of the European cancer patient coalition (ECPC), and the chair of Leukämie-Online, a German communication platform about leukaemia.

 

The moderator

Dr Phil Hammond

Phil Hammond is a doctor, comedian, writer and broadcaster. He has been a lecturer in medical communication at two UK Universities (Birmingham and Bristol) and presented six series of an evidence-based medicine show, Trust Me, I’m a Doctor, for BBC television.

 

Full biographies of all speakers can be downloaded here.

For the programme of the event, click here.

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Asked about why FASS.se could not be extended to the rest of Europe or translated, Manell stressed that even if FASS.se was translated into English, it would not be of great use, as it would still only include medicines available on the Swedish market, in forms and dosage that might not be identical in other countries. Whether a similar initiative could be put in place at the European level was not obvious either, as countries’ cultures with regard to freedom and regulation of information are very different.

During the discussions, participants were asked about whom they most trusted as a source of reliable information on health, and it was interesting to see that, at least in that room, governments, industry and doctors enjoyed a relatively high credit. Only the media were given much lower trust. One speaker concluded that this might give an indication of what patients are really looking for: have access to ‘pull’ information, i.e. information they request, and at the same time, be protected from ‘push’ information they never asked for in the first place.