About the project
In a world in which medicine is benefiting from digital progress and ever-increasing amounts of data are being generated, routine data from medical care must be accessed efficiently, securely and in a way that promotes innovation, made available for medical research and used to answer medical questions. The NUM-DIC project builds on the preliminary work of the Medical Informatics Initiative (MII), within which Data Integration Centres (DIC) have been established at most German academic medical centers with the aim of supporting data provision and cross-site data integration and analysis. As part of the NUM-DIC project, the established DICs are continuously expanding their service portfolio and tapping into new data sources.
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The infrastructure components, data sets and data usage regulations established at the NUM-DIC partners' DICs serve, in conjunction with central components from NUM-RDP, the German portal for medical research data and other central components developed in the MII, to enable Germany-wide data usage projects with the (potential) database of patient data collected in clinical care by 38 NUM-DIC partners and thus make important contributions to gaining medical knowledge. Together with NUM-RDP, NUM-RACOON and other NUM infrastructure projects, NUM-DIC will provide a national resource in which high-quality health data, patient partnerships and research expertise quickly deliver trustworthy answers that can improve healthcare.
Locally, the DIC will develop into a comprehensive research infrastructure service provider, supporting a variety of medical research scenarios for research at the site, but especially for networked research across sites. Each NUM-DIC partner is building an efficient technical, personnel and organisational infrastructure for this purpose. As a result, infrastructures are available across the board at all German academic medical centers to enable networked research with health data.
One of the major challenges is the secure processing of health data, which, due to its nature, constitutes particularly protected personal data. The infrastructure in NUM-DIC protects this data through standardised pseudonymisation steps, encrypted transmission and additional measures that protect against intentional or unintentional re-identification of individuals.
As part of the Medical Informatics Initiative, the four consortia DIFUTURE, HiGHmed, MIRACUM and SMITH have developed concepts for the secure and interoperable management of healthcare data. To this end, DICs have been or are being established at each academic medical center to make routine healthcare data accessible in a standardised and harmonised manner.
These technical infrastructures, the trained personnel and the established processes for data provision, governance and utilisation are now being consolidated and made permanent in NUM-DIC.
NUM-DIC is based on five years of fundamental development and harmonisation activities within the framework of the MII. During this time, the basic prerequisites for efficient cooperation between decentralised DIC components and central MII infrastructures were created both at the individual academic medical center sites with the establishment of the DIC infrastructures and in the cross-consortia harmonisation work in order to be able to use routine data for research across all locations in Germany. The results achieved in the MII working groups include
- a broad-based patient information and consent form (broad consent) for the use of data collected in the care processes of German academic medical centers for medical research (accepted by the Conference of Federal and State Data Protection Commissioners).
- The harmonised definition of an MII core data set with basic modules on patient demographics, case data, diagnoses, procedures, laboratory data, medication data and consent information as well as extension modules.
- the establishment of standardised data use and data governance processes throughout Germany (based on standardised data use regulations, standardised templates for data use contracts and local data use commissions, https://www.medizininformatik-initiative.de/de/nutzungsordnung)
- a framework participation agreement that regulates the legal framework for all stakeholders in the research data infrastructure who are involved in these processes.
- a harmonised interface definition between all technical components of the NUM-DIC partners and the central FDPG.
During the COVID-19 pandemic, the NUM-DIC partners supplemented this as part of the NUM-CODEX project with harmonised IT tools for the prospective collection of research data (tailored to the German Corona Consensus Dataset, GECCO) and components for the secure transfer of patient data to a central research database (subject to patient consent).
Based on this preliminary work, 24 German academic medical centers have currently connected to the FDPG and can support cross-site data utilisation processes based on the MII core dataset base modules.
People in the NUM
