‘Transparency’ is a term often used in access to medicines circles – typically thrown into a sentence with a couple of acronyms, with the assumption that our audiences know what we mean.

What we mean by transparency actually differs at each stage along the Research and Development (R&D) continuum: from knowing who is funding basic research and under what conditions, to being told the real cost of R&D; from knowing how medicines are regulated to being able to find out the content of medicine procurement negotiations; and from knowing how the information on patient leaflets is created to whether there is pharmaceutical company influence on physicians’ prescribing habits.

People working in the access to medicines and healthcare sector, and those we are targeting in government usually do understand us when we talk about transparency in medicines policy. But access to medicines affects everyone, everywhere, not just policy geeks and officials in Brussels. We all need to do more to ensure that patients across the European Union understand the importance of transparency, and what that means for their healthcare.

At HAI we try to shine some light on the more complicated aspects of medicines policy, which are often the most obscure and opaque, to empower citizens to better understand the powers at play behind the scenes, all the way through the drug development process. Over the last couple of years we have produced new, engaging tools to explain these issues to new audiences, for instance our TRIPS Flexibilities heatmap, our FAQ videos on pharmaceutical promotion, and our work on a living database of clinical trials at risk of bias.

Earlier this year we published a policy report, ‘The State of Transparency and Medicines Policy in the EU’ which reviews the progress towards and challenges of transparency in Europe, with a particular focus on transparency in clinical trials. This is an issue that has been front of mind during the COVID-19 pandemic, with unprecedented media attention on clinical trial results, often with little understanding of the pharmaceutical company public relations strategies that drive such conversations. The pandemic has also highlighted the problematic ‘closed door’ approach to national medicine procurement negotiations, which leave all the power in pharma companies’ hands. The report made a number of policy recommendations which, if met, will hold the European Commission to account on its promises around transparency.

To accompany the report, and to finish 2021 reinforcing our commitment to empowering citizens with greater understanding of the key issues in medicines policy, we have also produced two animations, which serve to bring the subject of transparency to life. The first focuses on decisions around marketing authorisation and added therapeutic value, posing the question, without transparency how can we really know that a new drug is safe, and better than what’s already on the market? The second highlights the uneven playing field brought about by secretive practices that cover up the costs of R&D and the price each country pays for a given medication.

We hope these animations, as well as the report, continue to support HAI’s calls for greater transparency in medicines as we head in 2022.

Animation 1

Animation 2