Blog posts


CAREPATH - Data, Delivery and Future Development
Published on 24 March 2025 Dr Tim Robbins, UHCW NHS Trust


On the 18th March 2025, The European Commission, in collaboration with the Polish Presidency hosted a major event on health data entitled: “The European Health Data Space (EHDS) – Unlocking Europe's Health Data Future Together.” The event was held to mark the formal adoption and publication of the EHDS Regulation, which is considered by many to be major milestone in Europe's digital health transformation.


The Euopean Health Data Space Regulation “aims to establish a common framework for the use and exchange of electronic health data across the EU. It enhances individuals’ access to and control over their personal electronic health data, while also enabling certain data to be reused for public interest, policy support, and scientific research purposes. It fosters a health-specific data environment that supports a single market for digital health services and products. Additionally, the regulation establishes a harmonised legal and technical framework for electronic health record (EHR) systems, fostering interoperability, innovation, and the smooth functioning of the internal market” (1).


The European Commission quote that there are three key aims to the European Health Data Space Regulations, which are quoted below (1):


  1. Empower individuals to access, control and share their electronic health data across borders for the healthcare delivery;
  2. Enable the secure and trustworthy reuse health data for research, innovation, policy-making, and regulatory activities;
  3. Foster a single market for electronic health record (EHR) systems, supporting both primary and secondary use.

The implications of the European Health Data Space Regulations and the celebration event were discussed at the European Institute of Innovation through Health Data (I-HD) 2025 Data Summit. Where it was also highlighted that Health has the largest share of global data assets and is one of the fasted growing data sectors.


CAREPATH looks to develop an Integrated Solution for Sustainable Care of Multmorbid Elderly Patients with Dementia. It is based on an ICT solution for optimizing clinical practice in the treatment and management of patients living with such multi-morbidity.


Both development of the CAREPATH Guideline in a Research Context, and possible future implementation into routine clinical practice is entirely dependent on the data environment within which the tool is developed and used.


The recruitment of patients to the CAREPATH platform requires high quality data within a potential participant’s clinical record to support screening and matching to the inclusion and exclusion criteria. Subsequent implementation of the CAREPATH platform in clinical practice will need good data quality and accessibility to identify which patients within a healthcare service may benefit from the tool.


Importantly however there may be variation in the Data Space across Europe despite the European Regulations, and further variations in how processes operate within the United Kingdom. Richards et al (2) highlight some of the implications and learning from the EHDS Regulations for the UK.


As the CAREPATH Project draws towards a conclusion, thinking reflectively, it is interesting to consider whether next steps in the work and future projects should look at how we can incorporate high quality health data, and learning from health data into optimising and deploying the tool. A number of similar Horizon Projects were presented at I-HD which could provide interesting models or even collaborative partners for example STRATIFY-HF (3) (also involving UHCW NHS Trust) and AI-PROGNOSIS (4).


There is an exciting future ahead, but we cannot neglect the central importance of high quality health data!


References


  1. European Health Data Space Regulation (EHDS) - European Commission
  2. Lessons from EHDS report final.pdf
  3. Home - Stratifyhf
  4. AI-PROGNOSIS | novel AI models