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General Data Protection Regulation - EPHA progress report calls for health research exemption in trilogue negotiations

The General Data Protection Reform (GDPR) entered into the trilogue phase in June with the aim of concluding discussions at the end of 2015 or soon thereafter. A new EPHA progress report describes the challenges of the GDPR experienced so far and confirms the crucial role of data for health research and science purposes. In 2012, following the release of the European Commission’s proposal for a draft regulation (setting out a general EU framework for data protection) and a draft (...)

European Parliament debate focuses on pros and cons of data driven healthcare

eHealth, mobile apps and digital medical services are sparking many hopes and concerns at the same time. The #Datacare debate held on 15 September 2015 at the European Parliament specifically explored the question, “What can data driven healthcare do for Europe?” In our globalised, digital world, things are changing rapidly and technology is an inevitable, driving feature of innovation. In the future, health systems are likely to be permeated more and more by technology. Now is (...)

General Data Protection Regulation - how to reconcile ethical and business concerns?

An event organised by the CEPS on 13 May 2015 provided an update of the status quo of the General Data Protection Regulation (GDPR) and presented issues under discussion during the Trilogue negotiations. Although the principal focus lay on stimulating dialogue between regulators and SMEs/start-ups, the debate also touched upon some health-related issues such as the development of eHealth as part of the Digital Single Market, and it brought up ethical questions related to the potential uses (...)

Support the European Data in Health Research Alliance!

A new European Data in Health Research Alliance was launched in early December. This campaign, supported by a number of health organisations active across Europe and representing research, patient and public health concerns, was set up to demonstrate in the most tangible way that personal data in research is vital because it saves lives. The Alliance was established by Cancer Research UK, the Medical Sciences Committee of Science Europe, European Patients’ Forum, the Federation of (...)

New cancer expert group: cancer is on the EU public health agenda

On the first meeting of the new expert group on cancer, which was held on 22-23 September, the Commission presented an overview of the EU priorities for cancer and an implementation report on previous work done in the field. It gave also an update on the ongoing CANCON Joint Action (European Guide on Quality Improvement in Comprehensive Cancer Control) and progress towards a European Cancer Information System. Finally, the International Agency for Research on Cancer presented the 4th (...)

[Press release] A win for transparency: EPHA calls for TTIP negotiating documents to be opened to public scrutiny

4 July, Brussels – Yesterday the European Court of Justice ruled (1) that access to documents relating to international activity would not be automatically exempt from EU transparency requirements. This decision opens the possibility for the European Commission to make public papers relating to the EU-US trade deal, the Transatlantic Trade and Investment Partnership (TTIP). EPHA welcomes the ruling and calls for the release of all TTIP documents into the public sphere and for the (...)

[EPHA response] Public consultation on patient safety and quality of care

In December 2013, the European Commission launched a public consultation on patient safety and quality of care in the EU, which ran until the end of February 2014. As Europe’s leading NGO advocating for better health, EPHA contributed to this consultation and provided the Commission with the online questionnaire and a letter. The consultation was aimed at seeking the opinion of civil society on: Whether patient safety measures included in the Recommendation 2009 have been (...)

[Update] General Data Protection Regulation

The European Commission introduced its proposal for a revision of the data protection regulations of the EU two years ago, yet despite agreement on a compromise text by the European Parliament in October 2013, completion of a finalised General Data Protection Regulation (GDPR) has now been delayed until after the May elections. An agreement reached on 22 January between EU Justice Commissioner, Vivian Reding, and representatives of the Greek and incoming Italian Presidency, has set the new (...)

[EU-US trade agreement] Would it benefit Europe’s public health?

In late October, EPHA attended a Transatlantic Consumer Dialogue’s (TACD) event intended to debate the prospective Transatlantic Trade and Investment Partnership (TTIP) between the EU and US and whether and how it is to benefit the consumers on both sides of the Atlantic. The event brought up a number of crucial considerations to be looked into what relate to public health issues. In a nutshell, this seminar stressed that the TTIP is mostly a drive towards de-regulation and a (...)

[Update] General Data Protection Regulation

Originally scheduled to take place in April, the European Parliament’s Committee on Civil Liberties, Justice and Home Affairs (LIBE) is now set to vote on the General Data Protection Regulation in October. This article provides a brief update on the events which have hindered the file’s progress and the current state of legislative deliberation. Progress to date Following the publication of the European Commission’s proposals to revise and update the EU’s data (...)
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