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The European medical information framework: A novel ecosystem for sharing healthcare data across Europe

Artikel i vetenskaplig tidskrift
Författare S. Lovestone
B. Vannieuwenhuyse
P. J. Visser
I. Bos
S. Vos
J. Streffer
Ulf Smith
D. Waterworth
J. van der Lei
P. Rijnbeek
J. L. Oliveira
M. Van Speybroeck
R. Verbeeck
D. Kalra
N. Lea
E. Molero
M. Lewi
M. Alexander
G. James
C. Sage
J. Praet
P. Egger
G. Singh
N. Hughes
Publicerad i Learning Health Systems
Volym 4
Nummer/häfte 2
Sidor e10214
ISSN 2379-6146
Publiceringsår 2019
Publicerad vid Institutionen för medicin, avdelningen för molekylär och klinisk medicin
Sidor e10214
Språk en
Länkar dx.doi.org/10.1002/lrh2.10214
Ämnesord catalogue, EMIF, EMIF-AD, EMIF-MET, use case, mild cognitive impairment, fatty liver-disease, translational research, clinical-research, prevalence, dementia, biomarkers, databases, platform, support, Health Care Sciences & Services
Ämneskategorier Hälso- och sjukvårdsorganisation, hälsopolitik och hälsoekonomi

Sammanfattning

Introduction The European medical information framework (EMIF) was an Innovative Medicines Initiative project jointly supported by the European Union and the European Federation of Pharmaceutical Industries and Associations, that generated a common technology and governance framework to identify, assess and (re)use healthcare data, to facilitate real-world data research. The objectives of EMIF included providing a unified platform to support a wide range of studies within two verification programmes-Alzheimer's disease (EMIF-AD), and metabolic consequences of obesity (EMIF-MET). Methods The EMIF platform was built around two main data-types: electronic health record data and research cohort data, and the platform architecture composed of a set of tools designed to enable data discovery and characterisation. This included the EMIF catalogue, which allowed users to find relevant data sources, including the data-types collected. Data harmonisation via a common data model were central to the project especially for population data sources. EMIF also developed an ethical code of practice to ensure data protection, patient confidentiality and compliance with the European Data Protection Directive, and GDPR. Results Currently 18 population-based disease agnostic and 60 cohort-based Alzheimer's data partners from across 14 countries are contained within the catalogue, and this will continue to expand. The work conducted in EMIF-AD and EMIF-MET includes standardizing cohorts, summarising baseline characteristics of patients, developing diagnostic algorithms, epidemiological studies, identifying and validating novel biomarkers and selecting potential patient samples for pharmacological intervention. Conclusions EMIF was designed to provide a sustainable model as demonstrated by the sustainability plans for EMIF-AD. Although network-wide studies using EMIF were not conducted during this project to evaluate its sustainability, learning from EMIF will be used in the follow-on IMI-2 project, European Health Data and Evidence Network (EHDEN). Furthermore, EMIF has facilitated collaborations between partners and continues to promote a wider adoption of principles, technology and architecture through some of its continued work.

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