In 2022, the European Commission (EC) published the Digital Decade Policy Programme 2030 that established digital targets and objectives for all Member States to be reached by 2030 across four areas: digital skills, digital infrastructure, digitalisation of business and of public services. As part of the digitalisation in public services, one goal is that 100% of citizens should have access to their health records online.
To enable the monitoring of Member States’ progress towards achieving this goal, the European Commission tasked us and PredictBy with developing a new Digital Decade e-Health composite indicator including a comprehensive monitoring framework and survey. In this context, it is crucial to understand what access to electronic health records (EHR) means and how to measure it.
By providing a comprehensive, nuanced framework for measuring access to electronic health records, the Digital Decade e-Health composite indicator serves as a catalyst for change, driving the digital transformation of healthcare systems across the EU. It’s an exciting time for digital health, and this new indicator promises to play a pivotal role in shaping its future.
Defining and measuring access to electronic health records
Digital health (or e-Health) is transforming healthcare, both from an economic and health perspective. It not only promises to save costs, automate processes, remove administrative inefficiencies, but it also has the potential to reform healthcare and personalise medicine. Patient-centred care, new medical services, AI-driven diagnostic tools, real-word medical evidence, scientific discoveries, and breakthroughs are only possible thanks to the availability of health data.
Our own Digital Health Study from 2021 concluded that 80% of EU countries have passed national legislation concerning EHRs in the last five years, yet there are still gaps and inconsistencies that need addressing. For example, some Member States don’t mandate the logging of health data processing, others provide citizens with a legal access but do not specify the location and technology of how to access their EHR data. Most countries specify the conditions for altering and archiving electronic health data via law, but only about a third allow patients to correct data entered in their EHRs by themselves. This raises questions about patient autonomy and the integrity of health records that goes beyond access. In addition, sending and receiving patient record summaries across borders is only possible in just five Member States, despite 18 Member States already having laws allowing the exchange of EHR data across country borders. There is clearly potential for improvement.
The new e-Health indicator
When talking about access to electronic health records, there is no uniform definition of what constitutes access and how to measure it. Many studies focus on things like usage (frequency) and ease, but leave out the construct of access itself, like regulation, security, user rights, visible data sets, etc. Therefore, the Digital Decade e-Health composite indicator addresses the topic through a health policy perspective, to create a measure that can be compared and monitored towards achieving the 100% mark by each Member State until 2030. To measure this level of access, we have split the Digital Decade e-Health composite indicator into four thematic areas:
- implementation of electronic access services for citizens
- categories of accessible health data,
- access technology and coverage,
- equitable access opportunities.
The Road to 100%
As of today, citizens’ access to electronic health records differs greatly across the four dimensions and between EU27 Member States resulting in a fragmented EU picture, not reaching 100% anywhere. While Member States are increasing their efforts to accelerate and advance secure and interoperable electronic health data infrastructures to improve access and use, gaps remain, meaning no country has yet fulfilled the 2030 target. Electronic results and reports, in particular medical imaging reports, hospital discharge reports and, to some extend laboratory test results, are the least accessible category of electronic health records data. Regarding access technology, we see that half of the EU27 Member States have not yet notified their eID authentication schemes, leaving a harmonisation gap for secure and mutually recognised access to electronic health data. When it comes to coverage, we see that especially the data supply gap is big, meaning few (private) healthcare providers are connected to data infrastructure providing access to data. Fifty percent of studied Member States do not guarantee equitable access according to the Web Accessibility Directive meaning disadvantaged groups of citizens have limited access to their electronic health data. To reach 100% of the target until 2030, all Member States would need to follow the Web Content Accessibility Guidelines and provide or improve additional support mechanisms, such as access for legal guardians or authorised persons to facilitate equal access opportunities.
The outlook: a call to action
To come closer to fulfilling the 2030 target of 100% citizens’ access to health records, Member States will need to assure that at least 80% of national populations can access their EHRs via a patient portal or a patient mobile app and that it contains a minimum set of health-related data stored in public and private EHR systems. This access further needs to be granted via secure means of authentication, using an eIDAS (pre-)notified eID scheme. Members States should facilitate equitable access opportunities for all citizens, especially guardians for children, people with disabilities, elderly, and other vulnerable groups. But being connected only makes sense if data is available. Therefore at least 60% of public and private healthcare providers should be connected and consistently supplying data to the e-Health infrastructure.
We believe that citizens’ access to their electronic health data is and will continue to drive the digital transformation of health systems. To improve and speed up this transformation, Member States could share good practices and ‘tools’ through capacity building activities, possibly supported by the European Commission and future studies or projects (e.g., policy twinnings).
It will be interesting to watch how Member States will progress towards the 2030 Digital Decade targets. Therefore, the monitoring activities will be carried out until 2030 and the results will be reported yearly as part of the State of the Digital Decade and will feed directly into the Digital Economy and Society Index (DESI).
The DESI and beyond
The DESI serves as a critical benchmarking tool for gauging the digital competitiveness and readiness of EU member states, making it indispensable for both policymakers and industry leaders. By evaluating key dimensions such as connectivity, human capital, and digital public services, DESI provides a comprehensive snapshot of where each country stands in its digital transformation journey. This is crucial for identifying gaps, setting priorities, and allocating resources effectively. The index not only stimulates policy dialogue but also encourages a competitive spirit among nations to improve their digital infrastructures and services. In an era where digitalization is integral to economic growth and social inclusion, DESI acts as a roadmap for countries to assess their digital strengths and weaknesses, thereby informing strategies to build a more cohesive and resilient digital Europe.
Access the full study: Digital decade e-Health indicators development – Final Report
Contact: Lucas Deimel email@example.com