This year, the European Union launched the European Health Data Space (EHDS), a groundbreaking regulation set to revolutionise how health data is accessed, shared and reused across member states.
Whilst the legislation won’t impact the UK, the ambitions and infrastructures of the EHDS pose interesting questions over the current health data environment at home.
Closing the gap in European Health Data
Eurostat is the main source of EU health data, providing administrative and self-reported figures on a range of health indicators. Whilst the platform aims to bring together the latest data from the continent, it is limited by each member states’ data proficiency. Eurostat datasets often fail to provide a complete picture due to a lack of comparable data, which in turn hinders cross national discussions on key health topics.
Studies have revealed that closing ‘data gaps’ in the EU health data space will go a long way in tackling ‘health gaps’ both nationally and within the European Union.
Access to health data, both in relation to the determinants of poor health and overall trends, is crucial in informing policy and monitoring health outcomes, particularly at a sub-national level.
This is why, as part of the European Strategy for Data, the European Health Union has introduced the ‘European Health Data Space Regulation’ (EHDS). A pioneering project which seeks to unlock the future of health data in Europe by supporting a single market for digital health services and products and establishing a common framework for the use and exchange of electronic health data across the EU.
The regulation is set to enhance individuals’ access to and control over their personal electronic health data, whilst enabling selected data to be reused for public interest and for informing policy and scientific research.
Understanding the future of the European Health Data Space
The European Health Data Space seeks to:
- Transform healthcare through data, by generating €11 billion in savings, enhancing healthcare service efficiency, driving digital health expansion, strengthening policy development and scientific research and bettering EU health outcomes.
- Introduce seamless health data access across borders, through secure sharing of medical history, reducing unnecessary duplicated medical tests and facilitating data-driven research and innovation.
- Advance digital healthcare, offering electronic health record access, providing higher individual control over own data, cutting down on paper based records and supporting telemedicine and cross-border collaboration.
The process for full implementation of the EHDS Regulation is set to take place in the upcoming years. Key implementing acts will be adopted by March 2027 with parts of the regulation entering into full effect by 2029. In 2034, third countries and international organisations will be able to apply to join the space for secondary use.
Can the UK learn from the EHDS?
Improvements made to the European Health Data Space raise important questions about our health data. In the United Kingdom health is a devolved issue, with responsibility for health policy, services and spending being held by the individual governments in England, Scotland, Wales and Northern Ireland. Because each nation is responsible for both collecting and publishing health data, the UK also has its own data gaps.
Similarly to Eurostat, the UK could benefit from a more open and transparent data space by fostering cross-border collaboration.
Through adaptation and by learning from the EHDS case in the EU, enhanced healthcare service efficiency, higher individual control over data, and improved health data research could be unlocked.
The UK Government has already begun to show signs of change. In April, Labour, alongside the Wellcome Trust, announced that they will invest up to £600 million to create a new health data research service which is set to transform access to NHS data by slashing red tape for researchers. Whilst the exact details still remain unclear, this investment could improve patients’ access to new treatments and technologies, in a move which has already been compared to the EHDS.
As well as unlocking health data for the benefit of patients, a more cohesive health data space in the UK would enable national stakeholders, organisations and charities to gain a greater understanding of key health issues. One example is cancer data reporting, where different levels of reporting by each nation mean it is difficult to gain a complete picture of specific cancer prevalence figures, which limits joined up thinking, as well as effective allocation of support and resources.
Although healthcare data regulations are far from meeting EHDS regulations standards, greater transparency and cross-border collaboration are both necessary and achievable. The impact of the Labour Government’s ‘Plan for Change’ is yet to be seen, but this commitment to open health data is a step in the right direction.