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Health Data Access & 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 endeavour to establish a Committee of Experts for health data access & accountability with a commitment to establishment of this in 2015 with the inclusion of this policy ask in Luxembourg Council Conclusion on Personalised Medicine that will be published on December 9th, 2015”

 

The objective of Health Data Access  & Accountability Taskforce  is became a platform that shall create results that have impact on members, citizens, participants, industry, economy and society.

Purpose:

  • 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 Union and national level;
  • To ensure effective exchange of views and best practice 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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