Health groups urge European Medicines Agency to improve access to information
Today an open letter signed by 23 health and transparency groups and five individuals from across Europe asks the European Medicines Agency to improve access to information by allowing Freedom of Information requests to be submitted by email.
Access Info Europe and TranspariMED jointly coordinated the initiative, with Access Info Europe taking the technical lead.
The issue at stake is seemingly obscure: The European Medicines Agency (EMA) currently does accept Freedom of Information (FOI) requests via email.
However, this minor technical barrier prevents FOI requests to be filed via the popular AsktheEU.org platform, which enables citizens to keep track of their requests, and third parties to see both the requests and the European Medicines Agency's answers. TranspariMED recently encountered this problem when filing an FOI request about unreported clinical trials.
Today’s open letter argues that the EMA’s current approach violates its own transparency rules, as well as broader European regulations.
Access Info Europe first flagged the issue with the EMA in 2019, but has so far not received a response.
Helen Darbishire, Executive Director of Access Info Europe, said:
“It is remarkable in the midst of the coronavirus crisis, when the importance of health information is paramount, and when we are all relying heavily on information technologies, that civil society has to mount a campaign for something as simple as an email address from a publicly-funded body.”
Till Bruckner, founder of TranspariMED, said:
“Much of TranspariMED’s research and advocacy rests on data obtained through Freedom of Information requests filed with national and regional institutions. Being able to submit such requests through transparency platforms like AsktheEU.org enables citizens and civil society groups to better track and reference institutions’ responses, and make the data released available to other stakeholders.”
“The European Medicines Agency is widely recognised as one of the most transparent medicines regulators in the world. TranspariMED hopes and trusts that the European Medicines Agency will soon implement the small technical fix required to improve patients’ access to information about clinical trials and the safety and efficacy of medicines.”
The signatories to the letter include Transparency International, Corporate Europe Observatory, Global Health Advocates, and Open Knowledge Foundation Germany. Full text of the letter and list of signatories here.
UPDATE 02 September: Health Action International has decided to also support this open letter. Thus, the call is now supported by 24 health and transparency groups.
UPDATE 01 October: EMA has opened a dialogue with Access Info Europe on how to imnprove access to information.