Why Bridge Health Task 8.2?
Task 8.2 extended the EUBIROD experience beyond diabetes: population-based registries for chronic diseases were used as a common platform for producing comparable European indicators while retaining distributed, privacy-conscious analysis.
The task aimed to maintain and strengthen population-based chronic-disease registries by standardising methods for EU-wide indicators and providing privacy-enhanced software for statistical analysis, data exchange and automated indicator production.
Partners
Task 8.2 gathered four major partners and 20 collaborating institutions from 18 EU countries, plus Norway and Israel.
Hub for International Health Research — Italy
Coordinating partner; Principal Investigator: Massimo Massi Benedetti.
University of Surrey — United Kingdom
School of Health Sciences; Principal Investigator: Fabrizio Carinci.
University Tor Vergata — Italy
University Policlinic; Principal Investigator: Luigi Uccioli.
Serectrix — Italy
Privacy, data protection and open-source technical expertise; Principal Investigator: Concetta Tania Di Iorio.
The EUBIROD Network supplied the wider collaborating register network and specialist expertise.
Partner directory and participating institutions ↗Objectives
The general objective was to gather, harmonise and disseminate procedures, methods and best practices in population-based registries as a common platform for accurate indicators of quality of care and outcomes for chronic diseases in Europe.
The strategic objective was to facilitate implementation, sustainability and maintenance of chronic-disease registries, including specialised software for statistical analysis, data exchange and automated indicator calculation locally and at EU level, while increasing compliance with privacy and data-protection requirements.
Workplan
The task generalised the BIRO approach into a disease-agnostic, modular open-source procedure. Work covered a general register data dictionary, blueprints for software and indicator production, documented technical manuals and a generalised Privacy and Ethics Impact and Performance Assessment (PEIPA).
Activities
- Development of the data dictionary and meta-registry.
- Deployment and generalisation of BIRO open-source analysis and reporting tools.
- Privacy-performance assessment and analysis of legal and ethical issues across chronic conditions.
Deliverables
8.5 Blueprint
Open-source platform for population-based chronic disease registers, October 2017.
8.6.1 User manual
Manual of technical specifications for users, October 2017.
8.6.2 Programmer manual
Manual of technical specifications for programmers, October 2017.
11.3.1 PEIPA
Final Privacy and Ethics Impact & Performance Assessment report, November 2017.