Health data

The NHS Confederation is a health sector leader in digital policy. Our expertise and in-depth knowledge of both health and digital policy, means that we are uniquely placed to bridge the gap between these two often distinct policy areas.

The ability to share data is vital for the functioning of the European healthcare sector and it is important that implications for the health sector are firmly on the digital agenda in the UK, Europe and beyond. We have a dedicated digital policy team who represent our members in key national and international initiatives: 

National level  

The NHS Confederation is an established health data policy leader in the UK, analysing and advocating for digital health policy on behalf of our members. Currently, our top priority is to secure an adequacy decision for the UK data protection regime. This decision would allow the continued free flow of health data between the EU and the UK and is vital for the functioning of the European health sector. It determines everything from the delivery of cross border health and social care for thousands of European citizens, to governing how health data is securely shared to advance research.

We represent our members and educate the public on the implications of data sharing for the healthcare sector through our media work and at key events including:  

• NHS Confederation Statement: Commitment to maximise efficiency of NHS data infrastructure will require serious investment
• Expert presentation on EHDAS at the 2021 Elixir Health Data workshop on 21 June 2021
• NHS Confederation Statement: Health leaders relieved by result of EU vote to approve UK data adequacy
• Wired: LIBE resolution on draft adequacy decision ignores real-life health implications
• NHS Confederation Statement: LIBE resolution on draft adequacy decision ignores real-life health implications
• Financial Times: England’s NHS scales up AI tools to help cope with coronavirus backlog 
• NHS Confederation Statement: European Data Protection Board paves the way for continued sharing of health data between the EU and UK
• Nature Index: Looming deadline on post-Brexit data sharing agreement has researchers worried
• Healthcare IT News: European Data Protection Board to strengthen sharing of health data between EU and UK
• PMLive: Health leaders welcome EDPB’s opinion on adequacy of UK’s data protection standards
• Healthcare IT News: Health organisations welcome draft decision to allow data flow between the EU and UK post-Brexit
• Wall Street Journal: EU Decision Frees U.K. to Handle Europeans’ Personal Data 
• NHS Confederation Statement: Positive adequacy decision protects patients but is only the first step 
• Science Magazine: Scientists fear no deal Brexit as deadline looms

The NHS Confederation provides in-depth and tailored support to members on data sharing issues. This includes supporting members to resolve operational issues as well as proving public guidance and advice on how best to prepare for post-Brexit data sharing arrangements.

Examples of our public briefings include:  

• Data adequacy and Brexit: practical implications for the NHS Data adequacy and a deal
• What the UK-EU Trade and Cooperation Agreement means for data sharing

The NHS Confederation convenes and chairs the UK Working Group on Sharing Health Data.  The Working Group includes UK health data experts, UK regulators and ethics committees such as the Information Commissioners Office, the National Data Guardian’s Office and the Health Research Authority. Together the group discuss and develop UK positions on the key health data issues of the day. 

European level

The NHS Confederation is the lead authority for the UK participation in the EU Joint Action Towards a European Health Data Space.

The Joint Action is an implementation tool for the Common European Health Data Space as outlined in A European Strategy for Data and in the context of the EU Health Programmes. The aim of the Joint Action is to improve cross-border use of health data for the benefit of citizens’ health, for public health, research and innovation, so that in the future Europe, citizens, communities and companies benefit from a protected and seamless access to health data regardless of where it is stored. The UK has a formal role and is an active participant in two of the four thematic work programmes.  

The NHS Confederation is one of only three UK members of the European Stakeholder Group (EHSG), a consortium of pan-European membership organisations from across the health sector. Together the group is focused on addressing on-going Brexit issues that affect the health sector in the UK and the EU and furthering shared UK-EU health interests. On health data specifically, the EHSG have been strong advocates for the need for a UK adequacy decision to protect the European Health Care sector, publishing a statement and hosting events on the topic.  

• Event report: British Chamber of Commerce (BritCham) Healthcare Committee on the European Commission's proposal for a European Health Data Space
• Statement: European Health Stakeholder Group welcomes the result of EU vote on UK data sharing agreement
• Statement: Maintaining the flow of critical health data
• Webinar recording: EU-UK data transfers, implications for the European healthcare sector
• Press release: The move by some MEPs to object to UK adequacy decisions ignores the real-life implications for European health

For more information and regular updates you can follow the EHSG on Twitter @EuropeanHealth1 

The NHS Confederation participates in the 1 Million Genomes Working Ethical, Legal and Societal Implications Working Group, attending as a guest expert on behalf of the UK and the EU Joint Action.  

International level

The NHS Confederation leads the UK consortium input to the National Initiatives Network. The Network brings together specialists working on the secondary use of health data and involves 19 countries and over 75 organisations.