EPF prepares recommendations on Data Protection

Rapporteur Jan Albrecht MEP (Greens/EFA, Germany) published in December 2012 the draft report on the proposal for a General Data Protection Regulation. EPF will soon provide recommendations from the patients’ perspective on this draft presented by the European Parliament’s Committee on Civil Liberties, Justice and Home Affairs (LIBE).

In our position published in December 2012, we strongly advocated for measures to ensure that the Regulation protects patients’ rights. Patients must be considered as data subjects and as owners of our health and genetic data. We also want to guarantee it contains measures to enable patients to benefit from these rights effectively.

The Albrecht report (draft LIBE committee report) has taken some of these concerns on board: It explicitly refers to the right to informed consent in healthcare, which EPF welcomes, as in healthcare and research the processing of personal health and medical data is inextricably linked with the patient’s right to informed consent. It also strengthens requirements for transparency and information to data subjects. This was a clear message emerging from the eHealth Task Force Report 'Redesigning health in Europe for 2020'.

For EPF access to ones’ own health data is a moral right, as well as a means of empowerment. The Commission’s proposal encompasses this right. The Albrecht report further strengthens it by expanding the right to data portability, to make it possible for data subject to have access to their data in a common format, or to have them transferred.

A key issue however is that the Albrecht report fails to recognize the value of the use of patients data for research purposes.  The report states that  “Processing of sensitive data for historical, statistical and scientific research purposes is not as urgent or compelling as public health or social protection. Consequently, there is no need to introduce an exception which would put them on the same level as the other listed justifications.” EPF strongly calls on the European Parliament to ensure that the right exceptions are in place, not to hamper the good conduct of research but as health research is invaluable for the patient community.

The LIBE committee will vote the draft report in the coming months.

For more information, please contact our Policy Officer Laurène Souchet.