HealthData@MAD-R&I: Enhancing Primary Care with Secondary Data Use for Research

Ana Isabel Gonzalez- Gonzalez, Montserrat León-García, Sonia Soto-Díaz, Juan Cárdenas-Valladolid, Luis Rodríguez-Rodríguez, Antonio Díaz-Holgado, Isabel Del Cura-González, Javier De La Cruz-Bertolo, Noelia García-Barrio, Cristina García-Fernández, Carlos Rodríguez-Antolín, Elsa María Moreda-Sánchez, José María Veganzones

Keywords: European Health Data Space, Federated data-sharing platform, Secondary use of health data, Interoperability, Data governance, Primary care

Background:

The HealthData@MAD-R&I project responds to the European Health Data Space (EHDS) strategy by developing a scalable, federated data-sharing platform in the Spanish region of Madrid. This initiative addresses critical barriers in primary health care (PHC), such as interoperability, data governance, and privacy, to enable secondary use of health data for research and innovation

Research questions:

1. How can a federated health data architecture enable secure, interoperable, and scalable PHC data sharing?
2. What governance and technical frameworks are essential for fostering trust and usability of secondary health data in PHC?
3. How can specific use cases validate the operational model and demonstrate value for stakeholders in PHC?
4. How can a federated health data platform enhance PHC by enabling secure, interoperable, and impactful secondary use of health data?

Method:

HealthData@MAD-R&I integrates existing platforms (Infobanco, Cloudera, and Hipócrates) into a federated data ecosystem. The project employs privacy-preserving technologies and standardized data formats (OMOP) to ensure compliance and interoperability. Four use cases are designed to demonstrate potential: optimizing referrals for rheumatic diseases, improving care pathways for breast cancer survivors, preventing unplanned hospitalizations, and evaluating statin effectiveness. Stakeholder engagement across healthcare providers, researchers, and policymakers underpins the governance model.

Results:

The project aims to deliver a scalable, secure data-sharing platform that supports secondary use of health data. The use cases are expected to validate the framework’s potential to enhance healthcare decision-making, enable data-driven research, and foster economic growth through innovation.

Conclusions:

The HealthData@MAD-R&I project demonstrates how a federated data-sharing platform can address interoperability and governance challenges while enabling impactful secondary use of health data. By validating its framework through diverse use cases, the initiative aligns with the European Health Data Space strategy and provides a scalable model for advancing healthcare and innovation globally.

Points for discussion:

1. How can this approach address real-world interoperability challenges and enhance the utility of data?

2. What lessons can be drawn from implementing a federated platform in a regional health system?

3. How can findings inform broader European and global health data-sharing strategies in PHC?

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