EFPIA PhRMA joint commitment to data sharing: Enhancing science for patient benefit
24.07.13
This is a proposal for increased data sharing that we believe to be a move towards improved transparency that will benefit everyone from patients to researchers. Three key pillars underlie the proposal: safeguarding the privacy of patients; respecting the integrity of national regulatory systems; and maintaining incentives for investment in biomedical research. These Commitments were developed in part due to our concerns regarding the EMA transparency proposal; we will submit a formal response to the EMA’s consultation reflecting those concerns, which will be made publicly available.
I think most people will welcome the Commitments we released today. However, I do not know if everyone will feel that we are doing enough. And not everyone is going to agree with our upcoming response to the EMA consultation. That’s already clear – and it’s fine. The point is that people take the time to read the proposal, examine our arguments, and question as they see fit. We are doing the same, and will continue to do so. We will continue to examine others’ positions an engage with stakeholders of all types. Earlier this week, many people were discussing the Guardian article on EFPIA and PhRMA’s interaction with patient groups on the topic of drug trials data. I was, frankly, surprised by the reaction. Of course EFPIA would discuss the topic of clinical trials data sharing and transparency with patient groups. Of course we would share our views and put forth our perspective to these essential stakeholders. You know what? Most of them don’t even agree with us. A good number of them have signed up for the AllTrials campaign.
To me, a pharmaceutical industry capable of positively impacting public health is shaped by two things – science and patients. I’ve spoken on this before: Science is what guides our industry, while our patients are what motivate its existence. When it comes to enhancing public health and improving patients’ lives, medical and scientific innovation is one of the most powerful tools we have – and must be protected accordingly. A positive plan for transparency will take this into account. A transparency that protects innovation is one that benefits patients – and patients, ultimately, are the bottom line. This is one point that I think all stakeholders can agree on.
