European Medical Information Framework

FACTS & FIGURES

Start Date
End Date
Call
IMI1 - Call 4
Grant agreement number
115372

Contributions
IMI Funding
24 356 848
EFPIA in kind
24 354 503
Other
7 433 763
Total Cost56 145 114

Summary

The EMIF project aims to develop a common information framework of patient-level data that will link up and facilitate access to diverse medical and research data sources, opening up new avenues of research for scientists. To provide a focus and guidance for the development of the framework, the project will focus initially on questions relating to obesity and Alzheimer’s disease.

Difficulties with data

Recent years have seen an explosion in the number of databases containing medical and research data, from Electronic Health Records (EHRs), cohort studies (in which a group of individuals are followed for a number of years), disease-specific studies, and biobanks, to name a few. Because this data is scattered across diverse platforms, it cannot be fully exploited. Linking up the data would allow scientists to significantly advance medical research and drug development.

However, in practice, this is rather difficult. Not only is the data fragmented, differences in coding systems and languages, plus legal and ethical restraints, hamper efforts to combine these sources of data. Furthermore, there are often information gaps.

There is therefore a need for a single system that allows researchers to link data on an immense scale, including patient health records, research data, survey and administrative data, imaging, social, environmental and economic data. Such a system should also be able to bring together data from different populations; this would increase sample sizes and facilitate the study of rare or highly specific subgroups.

A common information framework

EMIF will develop a common information framework that will not only facilitate access to existing data sources, but ease the creation of links between sources and, where needed, collect additional information. The work will require the team to address a number of issues, including data standards, semantic interoperability, ethics, data privacy, legal issues, and the development of an IT platform that allows access to multiple data sources.

To guide the development of the framework, the team will initially focus on two key research issues:

  • identifying the mechanisms that make some people more susceptible to dementias (such as Alzheimer’s disease) than others;
  • determining which individuals with obesity are most likely to develop complications such as diabetes.

Obesity and dementia are two of the greatest healthcare challenges of our time; EMIF’s work will pave the way for new diagnostic tools and treatments to help patients with these conditions. Looking to the future, additional research areas may be added to the framework through future IMI Calls for proposals.

Achievements & News

Join EMIF and i~HD for a conference on health data
July 2017

The European Institute for Innovation through Health Data (i~HD) and IMI’s EMIF project will hold a joint conference on ‘Realising the Value from Health Data - Improving Care and Research’ in Madrid, Spain, on 21-22 September 2017. There will be a strong focus on progressing towards value based healthcare, comparing health ministry, health insurer, policy experts, pharmaceutical industry, and health technology assessment (HTA) perspectives. ### Through presentations and panel discussions, participants will find out how hospitals are successfully reusing patient data as learning health systems, and improving their data quality. The conference will also showcase the state of the art in clinical research using big data, presenting research findings that could only have been discovered using large scale data, showcasing the latest in analysing high dimensional data. A major part of the conference will be dedicated to patients’ perspectives on reusing their health data for research. Speakers come from the Spanish Ministry, European Commission, patient associations, health insurers, policymakers, clinical research and the pharmaceutical industry. i~HD is a not-for-profit European institute, with a mission to guide and catalyse the quality, interoperability and trustworthy uses of health data, for optimising health and knowledge discovery. It was born out of the IMI project EHR4CR. IMI’s EMIF project is developing a technology and governance framework for the identification, assessment and (re)use of data for health research, and it will showcase progress in its final year at the event.

EMIF project helps shed light on role of omegas in Alzheimer’s
June 2017

Omega-3 and omega-6 unsaturated fatty acids play a role in the progression of Alzheimer’s disease, according to research published in the journal PLOS Medicine and supported in part by IMI’s EMIF project. Currently it is thought that the main reason for developing memory problems in dementia is the presence of two big molecules in the brain called tau and amyloid proteins.### These proteins have been extensively studied and have been shown to start accumulating in the brain up to 20 years before the disease onset. In the new study, researchers from King’s College London and the National Institute on Aging in the USA, looked at concentrations of thousands of metabolites in brain tissue samples of 43 people: 14 people with healthy brains, 15 that had high levels of tau and amyloid but didn’t show memory problems, and 14 clinically diagnosed Alzheimer’s patients. They found that six unsaturated fatty acids, including omegas, were significantly different in Alzheimer’s brains when compared to brains from healthy patients. Overall, their levels were lower than in the healthy patients and one omega, DHA, was increased. As this study was observational, it is not clear whether decreased levels of unsaturated fatty acids drive the progression of Alzheimer’s or they are a result of the disease. As one of the co-leaders of the study, Cristina Legido Quigley of King’s College London said: ‘While this was a small study, our results show a potentially crucial and unexpected role for fats in the onset of dementia. It is now important for us to build on and replicate these findings in a larger study and see whether it corroborates our findings’.

Simon Lovestone of IMI’s EMIF and EPAD projects awarded knighthood
June 2017

Simon Lovestone of IMI’s dementia projects EMIF and EPAD has been awarded a knighthood in the Queen’s birthday honours ‘for services to neuroscience research’. Professor Lovestone is the coordinator of IMI’s EMIF project, which is developing a common information framework of patient-level data that will link up and facilitate access to diverse medical and research data sources, opening up new avenues of research for scientists.### He also leads the work package on scientific challenges in IMI’s EPAD project, which is revolutionising the way we carry out clinical trials for treatments designed to prevent dementia. Professor Lovestone described himself as ‘thrilled and delighted’ by the honour. ‘The past 25 years working in dementia research has been, and continues to be, the most fulfilling and rewarding experience and it has been the greatest of pleasures to work with superb scientists and students in my group and through collaboration; I am humbled by the excellence of their work and their dedication,’ he said. ‘We are making progress towards therapies and tests for Alzheimer's disease and this award only spurs me on to redouble our efforts and defeat this disease that causes so much unhappiness to so many people. I remain convinced that we will succeed; and such success cannot come soon enough.'

EMIF opens up catalogue to research community
The EMIF project has announced that it is extending access to the EMIF Data Catalogue to the wider research community. The online catalogue currently includes 14 population-based data sources (e.g. electronic health records, regional databases) and 46 cohorts (mainly in the Alzheimer’s field) ###where the project partners have consented to providing information to bona fide researchers who want to explore potential data partners for their own work. At the moment, the catalogue provides basic information to help users investigate the data sources, but further developments are planned. ‘This is the first tool of the EMIF platform to have wider access, and in the coming final year we plan to have deployed platforms for researchers to be able to go beyond the Catalogue phase right through suitability evaluation and ultimately conducting studies with data source collaborators,’ the project leaders write. ‘On behalf of EMIF we hope that this wider access to the first tool of the EMIF platform will be a significant asset to the EU research community, and very much look forward to its continued development and use, eventually within a broader research platform and communities.’
Find out how to access the catalogue
(January 2017)
 

EMIF study uncovers ageing clues
Scientists from IMI’sEMIF project were part of a major study that paves the way for a simple test of how well a person is ageing. The findings, published in Genome Biology, could help to identify people at greatest risk of diseases associated with ageing, such as Alzheimer’s disease. ### The scientists studied the extent to which various genes were activated in thousands of human tissue samples. They found that the activation of some 150 genes in the blood, brain and muscle tissue represented a good marker of health in people who were 65 years old. The scientists were then able to turn this information into a simple formula to assess how well someone is ageing compared to other people of the same age. People with a poor score showed signs of cognitive impairment, suggesting that the research could be turned into a simple blood test to identify people who could be at risk of Alzheimer’s diseaseor other dementias. This is a major goal of the EMIF project.
 - Read a press release on the research from the Medical Research Council.
(September 2015)

EMIF studies add to evidence on Alzheimer’s risk
Two new papers in the Journal of the American Medical Association add to our understanding of the factors that increase people’s risk of developing Alzheimer’s disease. The research was supported in part by IMI’s EMIF project. ### The first study assessed the prevalence of amyloid plaques(clumps of protein commonly associated with Alzheimer’s disease) in both healthy people and people with varying levels of cognitive impairment. The second study reviewed the prevalence of amyloid plaques on positron emission tomography (PET) imaging scans of people with difference kinds of dementia. The findings highlight the impact of the APOE gene on the formation of amyloid plaques and on the risk of developing Alzheimer’s disease. They also underline the fact that amyloid plaques may start appearing 20-30 years before the onset of dementia symptoms (although not everyone with amyloid plaques will develop dementia, and not everyone with dementia has amyloid plaques). An accompanying editorial explains the importance of the new research. ‘These reports are the largest and most detailed to date and are critical assessments that help define the role of amyloid in the causation of cognitive impairment and dementia.’ Looking to the future, questions raised by the research include the role of other genetic factors (besides APOE) in amyloid formation, and the links between genetic risks and lifestyle factors such as smoking and high blood pressure. (June 2015)

Participants Show participants on map

EFPIA companies
  • Amgen NV, Brussels, Belgium
  • Boehringer Ingelheim International GmbH, Ingelheim, Germany
  • F. Hoffmann-La Roche Ltd, Basel, Switzerland
  • Glaxosmithkline Research And Development LTD, Brentford, Middlesex, United Kingdom
  • Institut De Recherches Internationales Servier, Suresnes, France
  • Janssen Pharmaceutica NV, Beerse, Belgium
  • Merck KGaA, Darmstadt, Germany
  • Novo Nordisk A/S, Bagsvaerd, Denmark
  • Pfizer Limited, Sandwich, Kent , United Kingdom
  • UCB Biopharma SPRL, Brussels, Belgium
Universities, research organisations, public bodies, non-profit groups
  • Aarhus Universitetshospital, Aarhus Sygehus, Aarhus, Denmark
  • Agenzia Regionale di Sanita, Firenze, Italy
  • Erasmus Universitair Medisch Centrum Rotterdam, Rotterdam, Netherlands
  • European Institute For Health Records , Lille, France
  • European Molecular Biology Laboratory, Heidelberg, Germany
  • Fondazione PENTA - for the treatment and care of children with HIV-ONLUS, Padova, Italy
  • Fundacio Jordi Gol I Gurina, Fundacio Privada Per A La Recerca A L'Atencio Primaria De Salut, Barcelona, Spain
  • Goeteborgs Universitet, Gothenburg, Sweden
  • Institut National De La Sante Et De La Recherche Medicale, Paris, France
  • Itä-Suomen yliopisto, Kuopio, Finland
  • Karolinska Institutet, Stockholm, Sweden
  • King's College London, London, United Kingdom
  • Københavns Universitet (University of Copenhagen), Copenhagen, Denmark
  • Leibniz-Institut für Präventionsforschung und Epidemiologie - BIPS GmbH, Bremen, Germany
  • Provincia Lombardo-Veneta - Ordine Ospedaliero di San Giovanni di Dio— Fatebenefratelli, Brescia, Italy
  • STICHTING VUmc, Amsterdam, Netherlands
  • Tartu Ülikool, Tartu, Estonia
  • Teknologian tutkimuskeskus VTT Oy, Espoo, Finland
  • The University of Exeter, Exeter, United Kingdom
  • The University of Manchester, Manchester, United Kingdom
  • Universidade de Aveiro, Aveiro, Portugal
  • Universita Di Pisa, Pisa, Italy
  • Universitat Pompeu Fabra, Barcelona, Spain
  • Universiteit Antwerpen, Antwerp, Belgium
  • Universiteit Maastricht, Maastricht, Netherlands
  • University College London, London, United Kingdom
  • University of Cambridge, Cambridge, United Kingdom
  • University of Glasgow, Glasgow, United Kingdom
  • University of Helsinki, University of Helsinki, Helsinki, Finland
  • University of Leicester, Leicester, United Kingdom
  • University of Luebeck, Luebeck, Germany
  • University of Oxford, Oxford, United Kingdom
  • Universität Leipzig, Leipzig, Germany
  • Universitätsklinikum Erlangen, Erlangen, Germany
  • Université Pierre et Marie Curie Paris 6, Paris, France
  • Vib, Zwijnaarde - Gent, Belgium
Small and medium-sized enterprises (SMEs)
  • Cambridge Cognition LTD, Cambridge, United Kingdom
  • Concentris Research Management GmbH, Fürstenfeldbruck, Germany
  • Custodix NV, Sint-Martens-Latem, Belgium
  • Electrophoretics Ltd, Cobham, United Kingdom
  • Genomedics S.R.L., Firenze, Italy
  • MAAT France, Archamps, France
  • Societa Servizi Telematici SRL, Padova, Italy
  • Stichting Informatievoorziening voor Zorg en Onderzoek, Utrecht, Netherlands
  • Synapse Research Management Partners S.L, Barcelona, Spain
Patient organisations
  • Alzheimer Europe, Luxembourg, Luxembourg
  • Vestische Caritas-Kliniken GmbH, Dattien, Germany
Third parties
  • PHARMO Institute N.V., Utrecht, Netherlands
  • Universitätsklinikum Schleswig-Holstein, Lübeck, Germany
  • Université Paul Sabatier Toulouse III , Toulouse, France

CONTACT

Project coordinator
Bart Vannieuwenhuyse
Janssen Pharmaceutica NV
BVANNIEU[at]its.jnj.com
Co-coordinator
Simon Lovestone
University of Oxford
simon.lovestone[at]psych.ox.ac.uk
Managing entity
Johan Van der Lei
ERASMUS UNIVERSITAIR MEDISCH CENTRUM ROTTERDAM
j.vanderlei[at]erasmusmc.nl
EMIF-Platform Academic leader
Johan Van der Lei
Erasmus Medical Center
EMIF-Platform EFPIA leader
Nigel Hughes
Janssen Pharmaceutica
EMIF-Alzheimer’s Disease Academic leader
Pieter Jelle Visser
VU University Medical Center
EMIF-Alzheimer’s Disease EFPIA leader
Johannes Streffer
Janssen Pharmaceutica
EMIF-Metabolic Academic leader
Ulf Smith
University of Gothenburg
EMIF-Metabolic EFPIA Leader
Dawn Waterworth
GlaxoSmithKline