August 28, 2020

A novel ecosystem for sharing healthcare data across Europe – The European Medical Information Framework (EMIF)

EMIF is the European Medical Information Framework project brought by the European Federation of Pharmaceutical Industries and Associations. This project created a framework to govern and simple technology to identify, evaluate, and (re)utilize data within the healthcare sector.

Now, about 20 population‐based disease agnostic and 60 cohort‐based Alzheimer’s data partners from over 14 countries are included within the catalog. The catalog will further grow in the future. The work conducted in EMIF‐AD and EMIF‐MET includes summarising baseline symptoms of patients, standardizing cohorts, evolving diagnostic algorithms, epidemiological analysis, classifying and verifying novel biomarkers, and selecting potential patient samples for pharmacological intervention.


The problem
The problem

Why Multi Platform Stored Medical Data Is a Problem?

Recently, the scientific research community has seen a surge in the form and amount of health data that can be utilized for further research. Yet, the data is spread across many platforms. Each platform has its principles and legislation, with the respective restrictions in usage.

Data standardization to a single platform would bring huge benefits for medical scientists across Europe. With a common platform, scientists could have access to existing scientific data and make important improvements in health research and medicine development.

Hence, there is a demand for a centralized platform that will enable researchers to locate, evaluate, and (re)utilize medical data on a broader range. Combining information from various populations and run identical studies in several countries.

The solution
The solution

What Was The Solution?

• Several modular elements assist the classification, evaluation, and analysis of the data on a shared platform
• A web‐based browser provides access for search inquiries on harmonized cohort data.
• The tools produced can operate locally at the data custodian site, maintaining local governance and provenance, ensuring data protection by design. These tools offer study-specific data extraction and anonymization.

The EMIF project intended to approach scientific issues in the field of obesity and AD, the so‐called use cases. At the same time leading the development of the EMIF tools and processes and examining the capability of data sources. Every use case had a dedicated research team. This team was responsible for the accurate execution of the use case within the agreed schedule. This team consisted of epidemiologists, medical experts, and data analysts, and data custodians. The team members were equally involved in both industry and academia. The collaboration between industry and academic partners also leads to increasing trust in the stakeholders.

The Effects Of This Data Management Project

Early biomarker development

Treatments for AD developed through the last twenty years have mostly failed to ameliorate the disease development. This has created a need for a different strategy, and focus on treating patients at earlier stages of the disease. Consequently, a lot of work is currently being conveyed on developing biomarkers for the earlier identification of AD. Mainly low invasive biomarkers like those in blood. The EMIF project endeavored to identify possible biomarker targets by ensuring the best use of the excess of immediately accessible AD cohort databases for research.

Disease insights

By reusing the AD patient data which was already available, the studies trying to identify a sound biomarker, have served to obtain more profound insights into disorder pathophysiology. EMIF has developed the AD biomarker field dramatically. Also, the tools that were developed are crucial to providing data access at the scale needed for collaborative studies on individuals with a preclinical AD phenotype.

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