Health Data Access and Accountability Taskforce

Stakeholders in civil society, academia, and industry have expressed concern over the impacts of the General Data Protection Regulation on health research.

In responding to these complex and sensitive issues, the stakeholders bring forward a proposal for a multi-stakeholder platform to oversee the implementation of the General Data Protection Regulation as it impacts the use of data for health research purposes.

“By 2018, the EU should endeavor to establish a Committee of Experts for health data access & accountability with a commitment to its establishment in 2015, with the inclusion of this policy in the Luxembourg Council Conclusion on Personalised Medicine that will be published on December 9th, 2015.”

The objective of the Health Data Access and Accountability Taskforce is to become a platform that creates results that have an impact on members, citizens, participants, industry, the economy, and society.


  • To  advise the European Commission on policy relating to the use of data and human samples in healthcare research
  • To advise the Commission in drawing up legal instruments and policy documents, including guidelines and recommendations
  • To propose specific initiatives such as the development of codes, standards, or specific research projects
  • To arrange wider stakeholder consultations as needed
  • To promote consistent global approaches
  • To advise the Commission in the implementation of Union actions and suggest improvements to the measures taken;
  • To advise the Commission in the monitoring, evaluation, and dissemination of the results of measures taken at the Union and national levels;
  • To ensure an effective exchange of views and best practices with member states
  • To assess what longer-term structures are needed to support EU policy in this area

For more information on the activities of this initiative, please contact Denis Horgan, Executive Director

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