Data sharing workshop offers opportunity to bring different opinions to one table
08.08.13
The EFPIA-PhRMA Commitments have gone to great effort to consider the different voices in the clinical trials data-sharing debate. This includes researchers, patients and, yes, the research-based pharmaceutical industry. I am well aware that people still have questions about the Commitments. In the coming weeks, I will be discussing each of the Commitments in turn in my blog. To me, it’s important that this material is presented in a way that anyone can understand, without a background in pharmaceutical sciences. On the EFPIA transparency platform, we’ve posted some videos where I try to explain these topics in an accessible way. I hope my blogs in the coming weeks will further this goal.
And I hope that in furthering the discussion, I can show why I believe the Commitments to be the most realistic and beneficial means of clinical trial data sharing possible today. Of course, I know there are other opinions and others have their own proposals for clinical trials data sharing: I read with interest the AllTrials Campaign’s detailed outline of its own data sharing proposal this week. And I look forward to discussing some of these opposing views at the Roadmap for Sharing Clinical Trial Data event on August 27. EFPIA is among those supporting the event, which brings together diverse stakeholder to discuss not just the EFPIA-PhRMA Commitments but the big questions surrounding clinical trials data sharing: What constitutes best practice in the use of clinical trial data? How can we best build a data-sharing health infrastructure? How are public health and commercial confidentiality best balanced?
As part of the programme, I will be participating in a discussion panel alongside Dr. Ben Goldacre, Hans Georg Eichler of the European Medicines’ Agency, and the European Patients’ Forum’s Nicola Bedlington, among others. These people have different and sometimes conflicting opinions – and that’s the point. We don’t have to agree. But if we are to ensure the best outcome for patients, we do have to discuss. And that is what is bringing these different people, with some very different opinions, to one table.
