AIDAVA Documents
All available documents from the AIDAVA project, with summaries. Downloaded from aidava.eu/results.
Fact Sheet (PDF)[edit]
Key facts from official fact sheet:
- Acronym: AIDAVA
- Full title: AI powered Data Curation & Publishing Virtual Assistant
- Programme: Horizon EUROPE / HORIZON-HLTH-2021-TOOL-06-03
- Contract number: 101057062
- Duration: 48 months (01/09/2022 - 31/08/2026)
- Project funding: EUR 7,720,615
- Coordinator: Universiteit Maastricht, Remzi Celebi — remzi.celebi@maastrichtuniversity.nl
Partner list from fact sheet:
- Austria: Medizinische Universitaet Graz
- Belgium: B!loba, European Cancer Patient Coalition, European Heart Network AISBL, Katholieke Universiteit Leuven, The European Institute for Innovation through Health Data
- Bulgaria: Sirma AI EAD (note: listed as Sirma AI, which owns Ontotext)
- Estonia: Sihtasutus Phoja-Eesti Regionaalhaigla
- Germany: Averbis, EURICE
- Netherlands: Universiteit Maastricht
- Romania: Egnosis SRL
- Spain: Data for Patients
Note: Bulgaria partner listed as "Sirma AI EAD" in the fact sheet — Sirma AI is the parent company of Ontotext.
Project Overview (PDF)[edit]
Architecture:
- Backend (Automation): Orchestration of different technologies to maximize automation in cleaning personal health data
- Frontend: User involvement — dialogue with user, tailored to individual skills, with explanations
- Output: Curated Data IDENTIFIED (Personal Health Record) + Curated Data ANONYMIZED (Population Patient Registries)
This dual output — identified personal records for the patient AND anonymized population registries for researchers — is central to the "curate once, reuse many times" vision.
Periodic Flash — November 2022[edit]
Project kick-off, October 2022 in Maastricht.
Two use cases defined:
- EU Breast cancer registry maintenance across 3 university hospitals in the consortium
- Cardiac patients personal longitudinal record to identify risk of cardiac failure
Two paradigm shifts:
- Patients are in control of their data through a "data intermediary" (defined in EU Data Governance Act)
- Patients are supported by an intelligent virtual assistant
Patients from EHN and ECPC onboarded November 25, 2022 to start developing requirements.
Periodic Flash — March 2023[edit]
Patient requirements workshop completed, February 2023.
Patient incentives identified:
- Main incentive: ensure treating physician has smooth access to complete medical record
- Happy to share data "in a controlled way"
Patient requirements for data sharing:
- Want to know who will access data and optionally obscure some information
- Want easy consent mechanism for all parties
- Want to know who uses data and for what purpose
- Reward should be envisioned for commercial use of shared data
- Concern about data donation — do they lose control?
Timeline:
- First release of system: summer 2024
- Second version: mid 2026
Periodic Flash — September 2023[edit]
First year completed successfully.
8 Patient Consultants from ECPC and EHN participated in:
- Online meetings, face-to-face workshop
- Definition of use cases
- Identification of personas and key features (health/digital literacy levels)
- Specification of business requirements
- Assessment of evaluation schedule and documentation
AIDAVA will continue working with Patient Consultants on evaluation and testing of preliminary prototypes before site patient testing in summer 2024.
Periodic Flash — November 2024[edit]
G1 prototype tested May 2024. Evaluation from July 2024 in three countries.
Test sites:
- North Estonian Medical Center (Estonia)
- Graz University Medical Center (Austria)
- Maastro Clinics, Maastricht University Medical Center (Netherlands)
Challenges:
- Ethics approvals time-consuming
- Finding patients interested in testing was difficult
- Doctors on summer vacation delayed recruitment
Patient feedback on G1:
- Usability on computer and phone was good
- System questions not formulated appropriately
- Some functionalities didn't work properly, others needed adding
- Benefit was not evident for many patients — needs better explanation (e.g. value of IPS and clean data)
Next steps:
- Enriching prototype with powerful AI solutions
- Working with patient organisations to clarify benefits
- G2 prototype testing planned for early 2026
Periodic Flash — March 2025 (Latest)[edit]
G1 evaluation report finalized January 2025. Big thank you to patients in Estonia, Austria, Netherlands.
Evaluation results:
- 83 patients recruited; 70 completed
- Overall performance of AIDAVA moderately acceptable by patients
- Explanations are suboptimal
- Approximately 45% of documents curated automatically
- Average time to curate a document is too high (20 minutes)
- Patient showed interest in AIDAVA-like systems mainly in countries without a central health data portal
What they're working on:
- In-depth analysis of users' feedback and improvements including features that improve benefits for patients
- Validation of business requirements, identification of ones met, prioritization of ones to implement
- Development and testing of prioritized requirements
- Amendment to study protocol and Ethics Committee Approval
- External communication on results
Timeline:
- G2 delivery: end 2025
- G2 testing: early 2026
- Project end: August 2026
Key Insights from Documents[edit]
What works:
- Usability of the system is good (computer and phone)
- Patients are interested in maintaining their health records
- 45% automation rate is a solid baseline for a first prototype
What needs improvement:
- Explanation system (why should I do this?)
- Curation time (20 min/document is too slow)
- Clearer benefits for patients (especially in countries with existing central portals)
- Question formulation in the system
For competitive analysis:
- The project is struggling with patient engagement and perceived value
- 45% automation means 55% still requires manual work
- 20 min/document is a significant bottleneck
- Countries with existing health data portals (like Estonia) show less patient interest
- G2 will add more AI but won't be tested until early 2026