International research faces major disruption without measures to protect and provide for the transfer of health and care data in future trade negotiations. Britain will be forced to negotiate separate data sharing agreements with 63 non-European Economic Area (EEA) states, including the US, which currently benefit from data or trading arrangements with the EU.
It will also require an adequacy rating from the EU in order to transfer data between EU member states, EEA member countries and selected territories. The adequacy rating will be critical if the UK is to retain easy access to the 24 European Reference Networks for rare diseases and the EU’s European Medicines Agency (EMA) network which covers more than 500 million people and is in the process of relocating its headquarters out of London.
Future Care Capital, a health and care charity, is calling on Ministers to take steps to avoid potential delays by empowering the Chief Data Officer (when appointed) and National Data Guardian to develop a dedicated ‘data privacy shield’ for health and care data, applicable to any future trade negotiations outside Europe, in order to safeguard the public whilst improving the UK’s competitiveness.
The development of a dedicated privacy shield could be provided for through the Data Protection Bill, which will be introduced this Autumn by Matt Hancock, Minister of State for Digital, whilst incorporating the EU General Data Protection Regulation (GDPR) into UK law.
The UK faces the prospect of having to forge further data sharing agreements with non-EEA countries – including the US, where President Trump signed an Executive Order ‘Enhancing Public Safety in the Interior of the United States’ back in January. The Order has called into question the efficacy of the current EU-US privacy shield agreement because EU nationals may no longer be extended the benefits of the US Privacy Act and have access to US courts for data protection. A dedicated health and care data privacy shield could serve to bolster public trust in the UK.
Dean James CBE, Chief Executive of Future Care Capital, said: “By empowering the Chief Data Officer and National Data Guardian to develop a dedicated ‘data privacy shield’ for health and care data, the government can guarantee the right level of privacy for individuals health and care data and make the UK more attractive to international investment in data-driven innovation and enterprise post-Brexit.”
“With a privacy mechanism in place, underpinned by world class data ethics, the UK can secure the public trust needed to lead advancements in treatments and technologies. Health and care technology is one of the fastest growing industries in the world. It is vital to the UK digital economy and to addressing the long-term health and care challenges in our country. We must strike the right balance between privacy and the opportunity that data represents in this digital era once we have left the European Union. We cannot afford to fall behind.”
“Our recent research concluded that a dedicated privacy shield should function as a key pillar for how the UK should prepare for the future.”