Too much patient information?

The EU initiative to regulate the information to patients about pharmaceuticals is already out-dated. The proposal for a directive was put together ten years ago - an eon of time for our Internet-managed days. Even the amendment attempt from 2008 doesn't adapt to the changes social media have made to the whole situation.

The new health Commissioner, John Dalli, seems to be ready to split the directive proposal into two parts, focusing on the fiddly information issues. Moving ahead in this minefield of mistrust will mean balancing between what really should be done and what might have a chance to pass through the Brussels apparatus.

The March 4 EP workshop on information to patients regarding prescription of medicines gave evidence that most stakeholders are unsatisfied with the present status quo, with national courts around the EU taking quite different positions on patient information. Equal rights to information should be a given fact within the Union. The directive proposals assume that patients are weak, need strong protection against their own choice and will depend on certified information from above. The opposite view - that "people with a disease" are as articulate and alert as Europeans trusted to access and compare information about housing, financial investments, traveling, etc. - is waiting for a full impact. Nowadays everybody claims to be "patient centered" but most return quickly to the position that too much information can be harmful. And behind the passion for the welfare of patients one can notice the cost containment worries among governments: too informed patients might affect the pharmaceutical budget. In general one might say that challenging the information monopoly among doctors and pharmacists is not very popular.

The new proposal by MEP Christofer Fjellner is more consumer friendly in tone but hardly by precise wording. Instead you can interpret his proposal in such a way that the emerging layperson-designed websites of medicines information today existing in every second member state should be put under government supervision and regulation. Even this kind of non-promotional sources of medical facts is evidently too much, to the benefit of those who believe that "official pre-vetting and monitoring" has ever advanced humanity. Question yourself whether we live in Europe of 2010 or Oceania of 1984?

The Health Consumer Powerhouse will look into and present alternatives to the directive proposals. Following questions will have to be answered: What has happened within the information landscape since the proposals were designed? How valid are the different arguments? What information do patients want? What should characterize the tomorrow's regulations? How can consumer information and healthcare expansion become part of a European economic growth strategy?