What is the idea behind NFDI4Health?

Epidemiological and clinical trial data have the advantage of being highly structured. Data col­lec­tions in this field entail detailed phenotypes of study subjects and are generated according to a defined protocol. These data are most appropriate to investigate (1) the prognosis, aetiol­ogy and burden of diseases on individual and population level, (2) the influence of risk factors incl. nutri­tional factors and (3) the efficacy of preventive, diagnostic and therapeutic interventions.

Although individual studies are highly standardised and well-documented, they seldom fulfil FAIR data principles: (1) Findability is often hampered. For public health data, so far, internati­onal attempts are limited to support standards for publication and to establish study/protocol regis­tries. Clinical trials are registered in the WHO approved German Clinical Trials Registry hosted by DIMDI, but the collected data are not described in standard formats. (2) Mo­dal­ities of data access are typically not reported in sufficient detail. (3) Dif­fer­ent epi­demio­logi­cal data­bases are usually not interoperable. For instance, there is vast methodo­logical hetero­geneity in approaches to assess dietary intake and to investigate associations with health out­comes. (4) Data protection require­ments restrict reuse of data because these highly sensitive data often cannot be anonymised and reuse is limited by the informed consent of study participants.

“New opportu­nities for data analysis in the interest of improving population health”

Based on these limitations, the key objectives of NFDI4Health are to create new opportu­nities for data analysis in the interest of improving population health, in particular: (1) to en­able find­ability of and access to structured health data from registries, administrative health data­bases, clinical trials, epidemiological studies and public health surveillance, (2) to imple­ment a health data framework for centralised searching and accessing existing decen­tral­ised epidemio­logical/ clinical data infrastructures, (3) to enhance data sharing, record linkage, harmonised data qual­ity assessments, federated analyses of personal health data in compliance with privacy regu­la­tions and ethics principles, (4) to enable the devel­op­ment and deployment of new, machine processable consent mechanisms and innovative data access services by opera­tionalising the FAIR data principles, (5) to foster data sharing and cooperation between clinical research, epi­demiological and public health communities and (6) to foster inter­oper­ability of current­ly fragmented IT solutions related to metadata reposi­tories, cohort browsing, data quality and harmonisation.

The overarching aim of NFDI4Health is to create an infrastructure based on standards which thus enables harmonisation, is expandable and facilitates the retrieval and use of public health data, (dietary) exposure data as well as clinical trial data, facilitating struc­tured combination and interoperability.

To identify, spell out and address the specific needs of the health research communities, NFDI4Health involves major actors in this field as (co-)applicants and participants.