Leaked memo shows resistance to data transparency

While GlaxoSmithKline ($GSK) and Roche ($RHHBY) have taken steps to make clinical trial data publicly available, some within the industry remain resistant to greater transparency. And a leaked memo shows they are devising strategies to counter European proposals for a public database.

The Guardian has seen a memo sent by European Federation of Pharmaceutical Industries and Associations (EFPIA) director general Richard Bergström to directors and legal counsels at many Big Pharma companies. In the memo--which the newspaper obtained from a pharma employee--Bergström describes a four-pronged strategy to make the case for keeping data private. One part of the plan focuses on encouraging patient advocacy groups to express concerns that making the data public could cause health scares.

Observers have noted how the plan makes use of the credibility of patient advocacy groups. "Patient groups get traction because they are assumed to represent the voice of the suffering. But industry uses them to say we're not going to get innovative medicines if [it] is deterred from investing by having to be transparent about their clinical trials," Health Action International's Tim Reed told The Guardian. Health Action International has previously exposed financial links between drugmakers and patient advocacy groups.

EFPIA reportedly created the plan with PhRMA, and Bergström then emailed AstraZeneca ($AZN), Eli Lilly ($LLY), GlaxoSmithKline, Merck ($MRK), Novartis ($NVS), Pfizer ($PFE), Roche and many smaller companies. In statements to The Guardian, GSK and Roche distanced themselves from the strategy, but AstraZeneca, Novartis and others failed to respond. Lilly sent a statement that lacked an outright rejection of the EFPIA strategy.

As well as mobilizing patient groups, the memo calls for talks with scientific associations about the risks of data sharing, as well as discussions with other businesses that are concerned about the release of trade secrets. Finally, the memo describes the need for a network of academics across Europe that can be called on to correct false interpretations of the data. EFPIA told the newspaper it is working with PhRMA and plans to make an announcement this week.

- read the Guardian article

Suggested Articles

The new solution aims to streamline the incorporation of human genomic data into clinical trial designs.

The $58 million financing round represents biopharma industry's growing interest in genomics data.

Clinerion inks a new deal that adds 60 million U.S. patients to its clinical trial patient recruitment system.