Data Saves Lives

A number of constituents have written to me about the proposed Data Protection Regulation and the Data Saves Lives campaign.

My response is below.

Dear constituent,

Thank you for writing to me about the proposed Data Protection Regulation and the Data Saves Lives campaign.

I would like to assure you that Labour MEPs are well aware of the issues you raise and have been working with colleagues on the European Parliament’s Justice and Civil Liberties Committee (LIBE) to try to ensure that the Regulation will not have a negative impact on crucial health research methods, whilst at the same time protecting citizens’ sensitive health data.

Medical research provides important benefits by improving our understanding of health and disease. Personal data is a vital source for observational studies which can lead to medical breakthroughs on serious illness including cancer and cardiovascular disease.  It is important to strike the right balance between facilitating the safe and secure use of patient data for health research and the rights and interests of individuals.

My Labour colleagues, Claude Moraes and Glenis Willmott have been working closely with numerous UK public health research organisations including the Wellcome Trust and Cancer Research throughout the negotiation process of this legislation and support the Data Saves Lives campaign.  At committee stage they tabled amendments aimed at bringing greater clarity to the proposed legislation and ensuring that the Regulation would not unnecessarily limit or threaten health research in the UK and the rest of the EU.  The aim of the Regulation is to strike the right balance between the rights of individuals to access and protect their health data, given that it is extremely sensitive data, whilst at the same time, recognizing the necessity of making the data available to authorized officials in the public interest including supporting health research

However, we remain concerned that the proposal as currently worded remains too restrictive and could prevent medical researchers from carrying out life-saving research.  It is for this reason that the European Parliament’s Health Working Group, which my colleague Glenis is co-chair of, will be holding a workshop on this issue on 19th November.  The workshop will include participation from a number of key people involved in this legislation, as well as other stakeholders and I hope that it will highlight the important role that personal data plays in medical research and raise awareness of how this could be inadvertently threatened by some of the proposals in the Data Protection Regulation.

I can assure you that Claude and Glenis are continuing to work with the Wellcome Trust and Cancer Research on this important issue and that Labour MEPs will be seeking further assurances in terms of health research before we can sign up to the final deal on the Data Protection Regulation.

I hope this has reassured you that Labour MEPs are working hard to ensure that EU law on data protection does not jeopardise our ability to carry out life-saving research but if you have further questions on this, or any other matter, please do not hesitate to contact me.

Yours sincerely,

Afzal Khan MEP