Introduction to the European Health Data Space
The European Health Data Space (EHDS) is a revolutionary initiative that promises to transform healthcare, research, and innovation across Europe. Launched by the European Commission in 2022, the EHDS aims to improve healthcare delivery, research, policy-making, and patient empowerment. One of its key objectives is to advance research and public health decision-making by facilitating the creation of large-scale, high-quality health data sets, which are essential for developing new treatments and precision medicine.
What the EHDS Offers
For individuals, the EHDS enables digital access to their electronic health records (EHRs), prescriptions, medical images, lab results, and discharge reports across all of Europe. This means that patients will have complete control over their health data and can access it from anywhere in Europe.
Challenges in Implementing the EHDS
Despite its potential, the current EHDS framework presents two critical challenges:
- While it is designed to benefit the broader population, it does not adequately address the needs and control of individual patients over their own data.
- The process of generating secondary data sets remains complex and inefficient due to the heterogeneity and lack of interoperability within and between individual patient records.
The Need for Data Harmonization
To optimize secondary data uses, personal health data should be curated first rather than extracted in their source format and then curated for each use case. Currently, the curation and publishing process of data is done after extraction for secondary use and is costly, time-consuming, and manageable only by experts. As a result, we are underutilizing large quantities of data, and there are limited benefits for the patient, who remains with heterogeneous data with suboptimal quality.
Introducing the AIDAVA Project
To address these challenges, a consortium of 14 partners launched the AIDAVA project, a Horizon Europe-funded initiative. Started in 2022, the project aims to address how patient health data is managed, integrated, curated, and utilized across Europe by developing an AI-driven virtual assistant. Through AIDAVA, the partners aim to provide patients with high-quality personal health records, offering personalized care while facilitating seamless and high-quality secondary data use.
How AIDAVA Works
The AIDAVA project has two main objectives:
- Maximize automation in the curation of personal health data to increase its reusability.
- Test the solution with three concrete actions:
- Establish an EU-wide breast cancer registry, integrating data from three federated centers across different countries and languages.
- Compute automatically a smart risk score to support follow-up of cardiovascular patients with a recent history of myocardial infarction.
- Automatically generate the Individual Patient Summary (IPS) in the EHDS-required European Electronic Health Record Exchange Format (EEHRxF) format, decreasing the burden on data holder organizations to generate these emerging standards.
Benefits of AIDAVA
The consortium is focusing its efforts on data curation by integrating all the data from multiple sources connected to each individual, then cleaning and homogenizing it. The AI-driven virtual assistant will assist individuals in curating the data and flag issues that request human intervention either by the patient or their dedicated curator.
Expert Insights
"Most healthcare initiatives, including EHDS, are focusing on population data. This does not benefit each individual patient with patient records that remain heterogeneous and error-prone; in addition, recurrent curation of source data for secondary use at population level is not sustainable," says Isabelle de Zegher, MD, MSc, the clinical coordinator of AIDAVA with 30+ years’ experience in digital health.
Conclusion
The European Health Data Space has the potential to revolutionize healthcare, research, and innovation across Europe. However, it faces challenges in implementing data harmonization and ensuring individual patient control over their data. The AIDAVA project aims to address these challenges by developing an AI-driven virtual assistant that maximizes automation in data curation and provides patients with high-quality personal health records.
FAQs
- What is the European Health Data Space (EHDS)?
The EHDS is a revolutionary initiative that promises to transform healthcare, research, and innovation across Europe. - What are the challenges in implementing the EHDS?
The current EHDS framework presents two critical challenges: the lack of individual patient control over their data and the complexity of generating secondary data sets. - What is the AIDAVA project?
The AIDAVA project is a Horizon Europe-funded initiative that aims to address how patient health data is managed, integrated, curated, and utilized across Europe by developing an AI-driven virtual assistant. - How does AIDAVA work?
AIDAVA maximizes automation in the curation of personal health data to increase its reusability and tests the solution with three concrete actions. - What are the benefits of AIDAVA?
AIDAVA provides patients with high-quality personal health records, offers personalized care, and facilitates seamless and high-quality secondary data use.
