Activists join hands and experience within the field of pharmaceutical products and access to information

In 2004, the EU adopted the revised directive on pharmaceutical products for human use, cf. Directive 2001/83/EC as amended with Article 56 A cf. 2004/27/EC.

This innovative and important step to make information for vision impaired consumers on medicine packages and from the Patient Information Leaflets accessible is important but obviously needs a vast amount of user input, ideas and involvement. In various countries the needs and experiences are different, various agencies, entities and companies are involved in the current handling of information and distribution of medicine, and a vast need to share experience and best practices is crucial for a successful outcome.

A networking group was set up under the European Blind Union in the automn of 2003 to deal with matters and circulate information about the provisions and requirements amongst all member organizations of the blind within the EU. Likewise, this group should be crucial in ensuring that the input of members on grassroot level was circulated an picked up for diversification and - ultimately - qualifying the discussions and the generation of ideas within the user environment of persons with a vision impairment.

In 2004, one step in this important process was to encourage persons from Danish Association of the Blind who were interested in the issues on accessibility and user influence and experience related to the use and identification of medicine, to undertake a visit to Poland, where they, in parallel with the more professional and organizations related exchange and support activities, had the opportunity to give their inputs and receive points of view and good ideas from vision impaired living in Poland.

The exchange of viewpoints, that took place during two visits, one at the end of March 2005 and one end May 2005, was facilitated by interpretors who translated the dialogues from Danish and Polish into English. During discussions it became apparent that it was important, but very difficult for the blind consumers, to understand the implications of the new directive requirements, and the activist users could jointly conclude that, although their respective organizations were very susceptive to experience and expressed needs, the organizations, when negotiating with the industry, had a hard time to promote and get full acceptance for the points of view expressed.

The activists had the opportunity to test a number of braille samples on cartons and packages to check various methods and to what extent braille labelling was clear and crisp enough for reading, especially considering the range of age and proficiency in braille reading. It was, however, during the discussions revealed that the availability of products with braille labels would be a good incitement for blind persons, even at an older age, to become better in reading braille : the fact that the offer was present as braille on the package would stimulate more blind persons to use braille to ensure independent identification of contents of products. During the second visit of the activists from Denmark, an opportunity was given to meet representatives from the drug administration authority and representatives from the pharmaceutical industry, so that the voice of the consumer could be heard and known.

Another issue which the visitors from Denmark discussed with members from the Polish Association of the Blind was the experience each one of the persons present had regarding Patient Information Leaflets, the current size of fonts and written text, and which formats should be recommended in order for all vision impaired to achieve access to this important information. Many said that they thought that braille was a precious format, but that the PIL texts were too long for weak readers to go through. They thought that, for the blind, either an audio version or a phone-controlled navigation system with voice control and response would be the generally best way to accommodate most end-users.

It was agreed that the exchange of experience, update on development and inputs on ideas for further improvement should take place either through direct email exchange or through the respective organizations of the blind.

The visit of the 5 activists from Denmark has reportedly meant a great stimulation of the debate and the interchange of information and views amongst the vision impaired in Poland.


John Heilbrunn



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