Should drug companies be allowed to provide information directly to patients on all of the prescription-only drugs they manufacture? I suspect many of you might have reservations—along the lines of they can’t be trusted to provide unbiased information and even if they tried, you can never make a clear distinction between information and advertising. But in December 2008, The European Commission made just this proposal and the rather tortuous process of trying to get member states on board is currently underway. Indeed, I’ve just been flown over to Brussels to facilitate a debate on the subject.
The Commission is obsessed with equality for its member states. The two previous debates I’ve chaired for it have been about whether we should be a Euro NICE (imagine all those guidelines in Greek!) and whether citizens should have free movement across borders for their healthcare. It all sounds commendably egalitarian but both proposals have stalled because member states retain ultimate control over their healthcare provision, and the governments of the poorer countries just couldn’t afford to pick up the tab for patients to travel to their more expensive neighbours for monoclonals or stenting.
The current debate is sparked by stark inequalities in information provision in different parts of Europe. In Germany, the mere mention of a brand name in public is considered illegal advertising. In Sweden, there is an extraordinarily comprehensive and detailed system of patient information, run by the drug industry with government supervision. It’s crammed full of generics, and you don’t have to speak Swedish to spot them (www.FASS.se).
What’s fascinating about FASS is that it’s the most trusted source of health information in Sweden. There’s information not just about the indications for the drugs, but also interactions, side-effects, use in pregnancy and breastfeeding, effect on the environment (very Swedish), what’s in research and development, how to enrol in clinical trials, and what to do in the event of an overdose. A lexicon translates words into speech and Braille, and you can get direct phone advice on how to use your inhaler from the company that makes them. What’s more, it’s (strongly) self regulated and very rarely receives any complaints.
The star of the debate was a German patient called Jan Geissler who was diagnosed with chronic myeloid leukaemia in 2001, but could not find any information about new treatments or trials because any such publicity is considered advertising in Germany. Fortunately, he speaks and reads English and had access to the internet, and was able to read transcripts of a conference in America that told him where a new drug, imatinib, was being trialled in Germany. He enrolled in the trial and he’s sure it saved his life. Now he’s given up his job to simplify and translate all relevant leukaemia publications into German so others can benefit as he did (www.leukaemie-online.de).
You can’t beat the internet, so restricting information in your own country is pointless if it is readily available online. This seemed to be the conclusion of the debate, with the race on to find an authoritative, accurate, up-to-date, easy-to-use website in English for everyone to access.
But hang on, how is our dear old www.nhs.uk doing? Pretty well, as it happens. It has far more information than just about any other EU country: you can link to a summary of the product characteristics of any drug, in patient-friendly form, developed by pharmacists and scrutinised to ensure it’s fair (www.medguides.medicines.org.uk). There are even videos on how to use your inhaler. The NHS Clinical Knowledge Summaries (www.cks.nhs.uk/home) allow you to choose between a patient information leaflet or a 10-page dissertation with all the references. Whatever Europe decides, the NHS is one of the world leaders in patient information. Something to be proud of, surely? G
See Dr Phil on his UK Tour!
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