‪#‎datamattersEU‬

As you may know, in the last couple of years, the European Union has been discussing a new piece of legislation that aims at strengthening individuals’ rights with regard to the processing and use of their personal data.

Depending on the outcome of the negotiations between the main EU institutions dealing with this matter (the European Commission, the European Parliament and the EU Council), the new regulation might severely harm medical research in Europe.

The proposal prepared by the European Commission establishes that individuals have to give specific and explicit consent for third parties to use their data. However, it foresees special conditions for the use of patients’ data in health care and research. The Commission’s proposal recognises that individuals’ interests can be protected through strong ethical and governance safeguards, such as approval by a research ethics committee. Furthermore, it foresees that patients can give broad consentfor their data to be used in research. 
The European Parliament’s position on this matter is radically different. Among others, should the European Parliament’s amendments be implemented, patients will have to give specific consent for the use of their data in each research project, with only few exemptions. This would greatly affect medical research and the health progress of people with RMDs and other diseases, since such restrictions would block or –in the best case- delay scientific and innovation activities.

The original legislation proposal is now being discussed by the EU Council (comprised of Ministers from all EU Member States). Once it finalises the revision, the three main EU institutions will start the negotiation and try to reach consensus on different aspects of this complex legislation.

EULAR, the Wellcome Trust, the European Patients’ Forum, Science Europe, and the European Public Health Alliance, among other patients and scientific organisations signed a statement where we called the European Commission and the EU Council to reject the Parliament’s amendments and keep the specific provisions proposed in the original proposal.

As the negotiations between the three main EU institutions are expected to start soon, it is a good time to raise our voice and call the European Commission and the EU Council to oppose the Parliament’s amendments.

In this sense, we would very much like to ask for your support to a social media campaign .

The campaign aims to show policy makers that both scientists and patients are united in their concern about the possible negative consequences of the negotiations around the EU Data Protection Regulation, as it might prevent or delay crucial research and innovation and hence harm health progress.

The voice of patients is crucial in this campaign. In theory, these amendments introduced by the European Parliament aim at protecting people from the misuse of their personal data by third parties. It is therefore important to show policy makers that those amendments will harm rather than benefit patients.

Participating in the social media campaign is easy and only requires a few minutes.

There are two ways you can contribute to this campaign:

1) You can get involved in this by writing one of the statements below on a piece of plain paper or card, hold it in front of you and take a photo, before posting it on social media with the #datamattersEU hashtag.

If you’re not on Twitter you can email your photo to the address catherine.castledine@cancer.org.uk and the organisers can share it for you.

Organisers will also gather the photos in a gallery on the webpage (www.datasaveslives.eu).

Statements for patients: 
• “I want to share my data to benefit health research” 
• “I trust health researchers to use my data for society’s benefit”

These messages can be used in any European language.

It would be great to if you could follow the social media campaign, retweet where possible and generally help create a buzz!

2) On the front page of the website (www.datasaveslives.eu) there will be regular news and updates. You would be more than welcome to contribute to the website by drafting a short article.


Thank you very much in advance for your kind support!

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