Since our last report, several groups have been active in suggesting modification of the text to facilitate epidemiologic research in Europe.
Epidemiologists have contacted members of the European Parliament from their home countries. Ministers of Research have been contacted, and newspaper articles have been published on the topic.
Not only epidemiologists have been active. Large funding agencies, societies, patient organizations, and the EMA have also voiced their opinion.
Attempts to modify the text have so far included keeping the text as a Directive and not as a Regulative. Since a Directive will provide more freedom for individual interpretation for the member states. Some have also suggested excluding research from the Directive or have provided modifications of critical passages in the text to make it more “research friendly”.
Although research problems are now being considered by the EU, epidemiologists have to continue the debate and try to influence decision makers in their home countries. The fight for rights to use personal data to provide information of public health importance is not over yet.
Enclosed please find the file with current suggestions for revisions. Comments and suggestions you may have to this should be addressed to the authorities in your country who are responsible for data protection.
Jørn Olsen, Cesar Victora, Neil Pearce, Patricia Buffler, Shah Ebrahim