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Secret EFPIA memo on data transparency leaked

Published on 22/07/13 at 09:13am
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A memo from the European pharma lobby group EFPIA has revealed that the industry is trying to ‘mobilise’ patient groups to help stop new rules on releasing trial data.

The leaked memo, from Richard Bergström, director general of EFPIA, went to directors and legal counsel at Roche, Merck, Pfizer, GSK, AstraZeneca, Lilly, Novartis and many smaller companies. It was leaked by a drugs company employee.

The email, seen exclusively by the Guardian, describes a four-pronged campaign that starts with “mobilising patient groups to express concern about the risk to public health by non-scientific re-use of data”.

The strategy was drawn up by two large trade groups, the US PhRMA lobby group and the European Federation of Pharmaceutical Industries and Associations (EFPIA), and outlined in a memo to senior industry figures this month.

The industry has long fought the need for data trial transparency, with both the ABPI and UK pharma executives saying that patients would rather see money spent on new medicines, rather than on preparing data from older drugs.

Pharma is also concerned about the misinterpretation of data if it is allowed into the public domain, as correctly identifying patterns in data sets requires highly specialist skills.

The latest strategy shows how patient groups - many of which receive some or all of their funding from drugs companies - have been brought into the battle.

But those supporting the AllTrials campaign, a UK initiative seeking to have pharma release more of its clinical trial data, believe the tide of transparency is inevitable and that pharma is stalling as much of its hidden data forms a negative view of its products.

The European Medicines Agency is currently drawing up new rules that will from next year make pharma companies release all of its study information for independent scrutiny.

But pharma is still fighting back, with InterMune and AbbVie both currently suing the EMA for attempting to release data on their products.

The EFPIA told the Guardian it had been working with PhRMA on a “commitment to enhance sharing of clinical data” to researchers and the public, and intended to make an announcement this week.

“Knowing that some people want all data to be made available to everyone, EFPIA is engaging with stakeholders to share concerns with harmful ‘re-use’ of data. We will engage not only with patient groups, but also with the scientific community,” it added.

Tracey Brown, director of the campaign group, Sense about Science, and co-founder of AllTrials, told the Guardian: “We now have the prospect of really significant developments to end the secrecy and make clinical trial reporting a practical reality and, finally, some sound commitments from parts of industry.

“In this context, the industry associations’ strategy to get others to raise further spurious problems is backward. It should embarrass anyone associated with it. I would say to the individual companies that they should publicly distance themselves from any association with EFPIA and PhRMA’s strategy now,” she said.

Ben Adams 

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