Getting the right information to patients is a more pressing issue for the pharma industry than transparency of trial data, according to UCB’s Roch Doliveux.
Speaking at the presentation of the Belgium-based pharma company’s 2012 financial results, Doliveux (pictured) said the ongoing debate over transparency was of little interest outside the UK, and that industry focus should instead be on ensuring information patients accessed online was safe and accurate.
“There is this interesting paradox where a company can’t communicate directly with patients, yet every patient can go on Google and find some information,” said Doliveux.
He even warned that the “voyeurism” of open access to trial data could lead to data being misinterpreted, with patients then subject to misinformation – an issue Doliveux described as the “worst thing that can happen in healthcare… especially when talking about severe diseases”.
Despite these concerns, Doliveux said UCB was open to sharing data from clinical trials with researchers and regulators who have the appropriate skills to make sense of the information.
“Any investigator that wants to access UCB clinical data on a patient basis, they are absolutely welcome, provided they have the credibility and the background to do that,” he said.
It’s an approach in line with previous comments from the European Federation of Pharmaceutical Industry (EFPIA), of which Doliveux is a board member.
EFPIA has been one of the main voices of concern amid the clamour for open access to trial data, which has been spearheaded by Dr Ben Goldcare following his publication of the book Bad Pharma and subsequent launch of campaign group AllTrials.
The online-based group has since attracted several big players in the industry, including NICE, IQWIG and, arguably most significantly, GlaxoSmithKline (GSK).
It seems unlikely UCB will add to these numbers however, with Doliveux warning of the dangers of open access to information when a drug is still in the research stage.
“Transparency in the competitive phase of clinical trials would be completely destructive to research,” he said.
Instead, transparency should be considered for drugs that have already reached market or have failed to do so, with UCB due to present information at an unspecified future conference from a trial investigating romosozumab in the healing of bone fractures, which failed to reach phase III.
“There is a big plus for some of us in the industry to start sharing failures so we can learn from each other and build success,” said Doliveux.
Different companies can also benefit from each other’s ideas through open innovation, said Doliveux, who is chair of the Innovative Medicines Initiative (IMI) – a partnership between the EC and EFPIA to fund innovative projects.
Doliveux said it was an approach that had particular benefits for smaller companies, such as UCB, with the company part of open innovation projects like the European Lead Factory, which consists of a library of small molecules provided by and accessible to larger pharma companies as well as SMEs and academic institutions.
“[UCB] first embraced open innovation in 2005 really, and we have really turbo-charged it in the last three years,” he said, referencing recent agreements with Biotie
“Open innovation is like an oxymoron for me,” he added. “If you think about Apple or BMW, they don’t think innovation is closed. They go and get the best innovation in the world, and they put it in their iPad or their new car to get the best possible products. And that’s the way we have to think about.
“Open innovation will be a debate that people will look back on in 10 or 20 years and think how anyone could ever talk about it in this way, when it’s so obvious.”