A Roadmap to Better Health Data: How Patients Are Shaping the Future with AIDAVA
Today, health data is most often scattered across different systems and in heterogeneous formats, making it difficult for patients to have all their health information available to use or share it when needed. Currently, data is created by different roles in healthcare (hospitals, pharmacies, laboratories etc) all using their own technical languages and standards. This fragmentation complicates patient care, but also makes research across different health topics more difficult. Data Interoperability - ensuring that data flows freely and meaningfully between systems - is essential to overcome this challenge.
AIDAVA’s Vision
The AIDAVA project is developing an innovative, AI-based digital solution to derive personal health records that are interoperable, reusable and accessible. For patients this means having all personal records available in one place in a way that these can be used.By using advanced artificial intelligence (AI), AIDAVA aims to empower patients by transforming raw data into structured, accessible, and usable formats that enhance the value and usability of the data. Overall the project aims at demonstrating that it is possible to automate key parts of the data curation process, transforming heterogeneous health data into an integrated personal health record. The first generation of the prototype is being evaluated in three European hospitals in Estonia, the Netherlands and Austria. This will help the team to identify necessary improvements. A second generation of the prototype is planned to be evaluated by hospital patients early 2026.
To achieve its vision and objectives, AIDAVA is based on three pillars (phases) outlined below.
Pillar 1: Building the Foundation
AIDAVA is focusing on developing the key components needed to achieve data harmonisation and reusability. These include tools to integrate and curate (i.e. “clean”) the data, and governance processes to ensure the long-term sustainability of the system. The tool development includes active consultation with stakeholders, such as patients, health professionals and researchers, to identify needs and set priorities. Including governance representatives will play a critical role in maintaining trust and transparency, both for patients and for the organisations that manage their data.
Pillar 2: Consolidate all Health Data into One File
AIDAVA will tackle one of the most difficult problems in health data management: semantic harmonisation (also known as interoperability). Semantic interoperability ensures that healthcare data is interpreted consistently across different systems and that clear concepts can be extracted from narrative text, which constitute up to 80% of the medical records. This requires different types of transformations and expertise in healthcare and digital literacy. AIDAVA believes this problem can be solved by integrating all patient data —whether narrative text, semi-structured, or standardised—and linking to tools that address the specific data interoperability issue found in the data and store the data into a specific format, known as knowledge graph based on a shared semantic standard (an ontology). In the long term, this ontology, along with a higher-level ontology, is expected to align all standards being used in health care (e.g. HL7 FHIR, openEHR, OMOP, SNOMED, LOINC ..)
Pillar 3: Provide Tools to Support Individuals in Using and Correcting Personal Health Records
The third phase aims to enable individuals - or their designated representatives - to create and maintain their personal health records integrating all their data from multiple data sources - into the formal representation, i.e. a knowledge graph, which constitutes the integrated harmonised and reusable health record. There are two main steps to achieve this goal:
- Creating tools (referred in pillar 2) and interfaces that allow individuals to easily bring their data together and start the process of cleaning them and maintaining and improving data quality.
- Answer questions that cannot be solved by the automated tools that select, organise, and manage datasets (typically missing or incorrect information).
This phase will see the launch of a user-friendly system, integrating these features into a cohesive, practical solution.
Involvement of Patient Advisors
Patients are not just beneficiaries of this work - they are key contributors. By sharing their experiences and providing feedback, patients help to shape a system that truly meets their needs. By testing prototypes and identifying barriers, their insights ensure that the final solution is practical, accessible and empowering.
Why AIDAVA Matters for Everyone
AIDAVA's system puts patients in control of their health data in a way that's never been possible before. Imagine being able to access one’s entire medical history in one place, share it instantly with a doctor, or contribute to research that leads to better treatments. AIDAVA's work is making these possibilities a reality, simplifying the healthcare journey and supporting medical advances.
More Information
Read the full ‘AIDAVA Opinion Paper: A roadmap for health data interoperability’ here: https://aidava.eu/news/aidava-opinion-paper-a-roadmap-for-health-data-interoperability