Patients campaign on Data Protection

EPF has recently joined the European Data in Health Research Alliance to drive a common campaign on Data Protection. We want to ensure the final Regulation allows the vital research that has taken place for many years to continue. Nick Meade of Genetic Alliance UK shares on our blog why he strongly supports the campaign based on a UK example.

Personal data in research can save lives. Researchers need to use some of the information about us to grow their understanding of disease which reaps great benefits. For example, the link between smoking and lung cancer – one of the greatest health breakthroughs of the last century – was established using personal data. Put simply, where research is concerned, personal data changes the game. 

The European Parliament adopted in March 2014 a first reading position for stricter rules on consent for research. If implemented, this Regulation would harm health research by creating an obligation to seek specific consent when personal data is used. Needless to say, limiting researchers’ ability to use personal data in their research would stem their ability to advance medical science and derail progress towards a healthier Europe.

And that’s why we – the organisations behind this new alliance – are campaigning on the EU Data Protection Regulation. Changes made to the draft law by the European Parliament would compromise researchers’ use of personal data beyond recognition. Not only would this threaten research and ultimately health, it is also unjustified: safeguards (like ethics committees) already exist that keep checks on how personal data is used in research – and these already do a great job of keeping peoples’ data safe.

 Our ask is simple: the crucial exemption that excused researchers from the obligation to ask specific consent when personal health data is used in research – a welcome element of the Commission proposal – must be reintroduced in the final text of the regulation. 

Please visit our blog to read Nick Meade’s article (link).

More information: @datamattersEU!