101,148 of 125,000 signatures

Key MEPs members of the ENVI and LIBE committees

Petition

We want the right to privacy over our medical records. This means having control over our personal health information, who has access to this information and for what purpose.

We demand you to amend the European Health Data Space by:

  • Requiring explicit consent from patients regarding sharing of medical records for purposes not directly related to treatment(aka for secondary use)
  • Limiting the extensive categories of ‘health data’
  • Narrowing the scope of how this information can be used, and who can access it

Why is this important?

The European Commission is proposing to hand them access to our sensitive, private medical records! The new law plans to streamline the sharing of medical records and information. For example, making it easier to share an MRI scan from a holiday injury with your GP at home. But as part of the same law, the EU plans to forfeit our right to privacy and undermine trust with our doctors.

As it reads now, the new law would compel healthcare providers to share sensitive medical records with just about anyone who wants them for “research”. This includes Big Pharma, Big Tech and insurance companies. What's worse is that they won’t need our permission to access our data, or to even inform us that they’re using it.

And that’s where we come in. Instead, we can make it so that this law protects our privacy and our medical records, and still makes healthcare systems across the EU more efficient. Now the European Parliament will have its say. Some MEPs are outspoken on protecting patient’s privacy. Others are on the fence, and they need a push ahead of a key vote in July.

We all want to feel healthy and safe - that's the first step in being able to thrive in our lives and communities. For that, we need to be able to trust our healthcare systems and providers to not just care for us but also protect our private medical information from being exploited. But if the new European health data law is passed in its current form, it'll undermine the very trust that underpins our health care system and allows us to reveal sensitive information to our doctors.

Through the European Health Data Space, the European Commission wants to create a modern, harmonised way to better use our health data, but at what cost? Patients would have no say over the sharing and commercial exploitation of their data and would not even be informed about who receives it. The proposal fails to protect our right to privacy over our medical records and health information, and long-established principle of doctor-patient confidentiality.

What’s the problem?

European data protection law rightly defines medical records as being particularly sensitive and awards it special protection in order to save its confidentiality. [1]

The main issue with the European Health Data Space is that every aspect of our health information can be made available to anyone with a research interest, and used for commercial purposes and therefore for a profit without needing our consent. Your medical records include information about all aspects of your life. From the moment you were born, through childhood, puberty, and every sick leave, mental challenge, and other health issues you ever had.. Handing out our most intimate personal information to everyone from researchers to pharmaceutical corporations to Big Tech makes doctors and other medical and healthcare professionals complicit in a massive breach of patients’ trust. [2]

This would make our most personal and sensitive records vulnerable to Big Pharma, Big Tech and insurance companies, ready to mine and exploit it in the pursuit of turning a profit.

The primary purpose of the European Health Data Space is to modernise and harmonise healthcare systems across the EU. In pursuing this, EU lawmakers shouldn’t take away our right to privacy and control of our medical data.

What can lawmakers do to uphold patient’s privacy?

We’re calling on lawmakers across the EU to amend the European Health Data Space by:

  • Requiring explicit consent from patients before any of their health data is being handed out for secondary use
  • Limiting the extensive categories of ‘health data’ to what is absolutely necessary for medical public interest research
  • Narrowing the purposes for which this information can be used, and who can access it

References:

  1. European Court of Human Rights in the case of I v Finland, Strasbourg, 17 July 2008. Available at: https://hudoc.echr.coe.int/eng?i=001-87510.
  2. EDRi Position Paper on European Health Data Space: https://edri.org/wp-content/uploads/2023/03/EHDS-EDRi-position-final.pdf
Tweet to Sara CERDAS, Lucia ĎURIŠ NICHOLSONOVÁ, Nils TORVALDS, Marian-Jean MARINESCU, Stanislav POLČÁK, Maria SPYRAKI, Monika FLAŠÍKOVÁ BEŇOVÁ, Traian BĂSESCU, Tudor CIUHODARU, Heléne FRITZON, Teuvo HAKKARAINEN, Martin HOJSÍK, Karin KARLSBRO, Jessica POLFJÄRD, Sándor RÓNAI, Alexandr VONDRA, Pernille WEISS, Michal WIEZIK, Emmanouil FRAGKOS, Cyrus ENGERER, Emma WIESNER, Elena YONCHEVA, Tomas TOBÉ, Ramona STRUGARIU, Sara SKYTTEDAL, Isabel SANTOS, Karlo RESSLER, Evin INCIR, Marina KALJURAND, Anna Júlia DONÁTH, Vasile BLAGA, Vladimír BILČÍK, Abir AL-SAHLANI, Maria GRAPINI, Elissavet VOZEMBERG-VRIONIDI, Emil RADEV, Nuno MELO, Paulo RANGEL and Yana TOOM

Can you imagine a world where every medical exam, urine sample or prescription you’ve ever had was just a click away? With this information ready to fall into the hands of big tech and pharma, who are waiting to harvest this information for profit.

We could be hurtling towards this reality right now. The EU is proposing a new law which could see your health records handed over to just about anyone who wants them for “research” — including Big Pharma and Big Tech.

Right now, MEPs who’ve been tasked with delivering this law, are struggling to find the balance. They’re bombarded by high-flying lobbyists who represent the interests of a few. But our voices are missing.

This is the moment where, together, we must call on MEPs who sit on the crucial LIBE and ENVI committees to the European Parliament to amend the European Health Data Space file.

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Can you imagine a world where every medical exam, urine sample or prescription you’ve ever had was just a click away? With this information ready to fall into the hands of big tech and pharma, who are waiting to harvest this information for profit.

We could be hurtling towards this reality right now. The EU is proposing a new law which could see your health records handed over to just about anyone who wants them for “research” — including Big Pharma and Big Tech.

Right now, MEPs who’ve been tasked with delivering this law, are struggling to find the balance. They’re bombarded by high-flying lobbyists who represent the interests of a few. But our voices are missing.

This is the moment where, together, we must call on MEPs who sit on the crucial LIBE and ENVI committees to the European Parliament to amend the European Health Data Space file.

Here’s some talking points you can use for your email:

  • The proposed European Health Data Space must prioritise patient privacy over the interests of big technology and pharmaceutical companies.

Limiting available information:

  • We should reduce the extensive categories of ‘health data’ to what is absolutely necessary for medical public interest research.
  • The purposes for which this information can be used, and who can access it, must be narrowed.

Consent is key:

  • The first step in protecting the patient's privacy is to ask for permission.
  • MEPs should support an opt-in system, where people have a choice to opt-in to the European Health Data Space and for their medical information to be shared for research purposes.
  • It’s important to trust that individuals are able to make that decision for themselves.

Keep corporations away from our medical records:

  • Our medical records are not yours to use for commercial purposes! They should NOT end up in the hands of big technology or pharmaceutical companies.
  • Ask your MEP to limit the list who can access this information, and for what purposes.
  • MEPs should exclude the sharing of any use of medical information for purposes that isn’t related to the furtherance of medical treatment.
  • Research is important, and you could express that you support your medical information being used proportionately and appropriately for public interest research. But this doesn’t warrant a free-for-all in terms of who can access private medical information...

Undermining of patient’s trust:

  • You could tell your MEP how and why the right to patient privacy is important to you.
  • This is the basic underpinning of relationships with medical professionals — that we trust our private medical information won’t be shared.

Tips on how to craft your message:

  • KEEP IT POLITE: MEPs are much more likely to respond to a friendly message from a concerned constituent.
  • MAKE IT PERSONAL: Talk about why this topic is personally important to you. Decision-makers are human beings too! We know that personal messages are a good way to get through to them.
  • ASK FOR A COMMITMENT:Ask for the MEP to support the inclusion of explicit patient consent, (an opt-in system) for their medical records to be shared for research purposes. Ask them to support the protection of patients’ privacy from the interests of the pharmaceutical and tech industries.
  • ASK FOR A RESPONSE:It’s always worth making clear that you’d like them to consider your message and respond.
To: Key MEPs members of the ENVI and LIBE committees

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Thank you for joining our call to show MEPs how many of us want to protect patient’s privacy over Big Tech profits.

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