Data Saves Lives: The Impact of the Data Protection Regulation on Personal Data Use in Cancer Research

15-01-2016

This report summarises the presentations and discussions of the workshop on data saves lives, held at the European Parliament in Brussels on Thursday 19 November 2015. The aim of the workshop was to provide background information and advice regarding the proposed General Data Protection Regulation and the impact it may have on the use of personal health data in cancer research. During the first part of the workshop the policy context and state of play of the proposed new Regulation were presented. An update on the Trilogue discussions and latest amendments to the text of the Regulation were given; obstacles and opportunities for harmonisation of cancer data were also discussed. The second part of the workshop focused on the impact of the proposed Regulation on cancer research. Access to data, ethical standards, data storage, and a European project on cancer survival were covered during this session. All presentations highlighted the need for a broad consent (a one-time consent given by data subjects to allow the use of their data for a variety of research studies which are subject to strict criteria) in order to make cancer research possible. Finally, future developments based on the experience of healthcare providers, patients and the industries were discussed. Possible practical solutions were given that could solve the obstacles of the proposed Regulation faced by the cancer research community.

This report summarises the presentations and discussions of the workshop on data saves lives, held at the European Parliament in Brussels on Thursday 19 November 2015. The aim of the workshop was to provide background information and advice regarding the proposed General Data Protection Regulation and the impact it may have on the use of personal health data in cancer research. During the first part of the workshop the policy context and state of play of the proposed new Regulation were presented. An update on the Trilogue discussions and latest amendments to the text of the Regulation were given; obstacles and opportunities for harmonisation of cancer data were also discussed. The second part of the workshop focused on the impact of the proposed Regulation on cancer research. Access to data, ethical standards, data storage, and a European project on cancer survival were covered during this session. All presentations highlighted the need for a broad consent (a one-time consent given by data subjects to allow the use of their data for a variety of research studies which are subject to strict criteria) in order to make cancer research possible. Finally, future developments based on the experience of healthcare providers, patients and the industries were discussed. Possible practical solutions were given that could solve the obstacles of the proposed Regulation faced by the cancer research community.

Ārējais autors

Paola BANFI, Rachel DEMPSEY, Manon EMONTS and Hana SPANIKOVA