Press Release

24th August 2017

Health data fears over post-Brexit trade negotiations

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.”

ENDS

Press contacts

For all press enquiries, please contact Joel Charles, FCC Deputy Chief Executive, at [email protected] or call 07377338322.

Notes to Editors

  • Dean James CBE is available for broadcast interview. He is a former Chief Operating Officer at the Department for Work and Pensions.
  • Future Care Capital’s recent report, ‘Unleashing the Potential of Health Care and Data’ explores how the United Kingdom (UK) might support data-driven research and innovation to transform health and care. It also makes plain that, to achieve this, the UK needs to blaze a trail in the development of ‘data ethics’ to proactively build trust whilst safeguarding individuals.

Adequacy decision

  • By leaving the Customs Union and the Single Market, the UK will need an adequacy rating from the EU if it wants to continue working across borders. Without such a rating, there is uncertainty as to whether the City will be able to operate in the same way. The finance sector is a key driver of the UK economy, accounting for 12% of output as well as employing 2.2 million people.
  • The countries that are currently judged by the European Commission to provide an adequate level of protection to personal data are: Andorra, Argentina, Canada (commercial organisations), Faeroe Islands, Guernsey, Israel, Isle of Man, Jersey, New Zealand, Switzerland and Uruguay. The effect of an adequacy decision is that personal data can flow from the 28 EU countries and three EEA member countries (Norway, Liechtenstein and Iceland) to that third country without any further safeguard being necessary. Taken from: http://ec.europa.eu/justice/data-protection/international-transfers/adequacy/index_en.htm

About Future Care Capital (FCC)

FCC is a charity, emerging from the sale of the awarding organisation, the Council for Awards in Care, Health and Education (CACHE), in September 2015.

Beginning life as the National Nursery Examination Board (NNEB) in 1945, the charity has evolved throughout its 70-year history and continues to have Her Majesty the Queen as its Royal Patron.

Following the sale of its awarding organisation business and assets (including the CACHE and NNEB brands) the charity has now embarked on its next chapter.

The Trustees have developed a detailed strategy for the future direction of the charity and have recently approved a 10-year business plan. The Trustees have identified the following vision, goals and aspirations that follow on from the Charity’s objects:

Charitable Objects: To promote education, training, quality and standards in care, health and education and allied disciplines.

Vision Statement: The charity will be known for being the leading independent voice for applying evidence that will advocate for and deliver a step change in health and care, including the advancement of quality and standards as well as education and training for allied professions as a sustainable charity.

Mission: Engage, educate and involve all generations in the development and delivery of unified health and care provision.

Key Beneficiaries: Those in receipt of care.

Key Goals and Aspirations:

  • Be recognised as a leading advocate and thought leader;
  • to deliver a step change in the advancement of quality and standards, education and training in care and health and allied professions; and
  • sustainably grow impact.

The charity has adopted an agile approach to delivery underpinned by an enabling internal culture and supporting systems that reflect its core values of empathy, diversity, openness and professionalism.

The charity’s core offerings are delivered through two collaborative but independent delivery vehicles:

Evidence based Advocacy – Developing new policy propositions and solutions supported by evidence-based research, stimulating debate and innovation through events, publications, projects and discussions with diverse stakeholders including the general public.

Innovation Investment Fund – In pursuance of FCC’s charitable mission, the charity will deploy its resources to identify and support innovation through the launch of a dedicated investment fund. The fund will invest in early stage technology based health and care entities with high societal benefit.

Legally structured as a charity, FCC intends to operate as a dynamic, agile and commercially aware organisation: a true social enterprise.

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