Healthcare data has the potential to transform our understanding of health, disease and outcomes, yet it is currently scattered across multiple institutions and countries, stored in different formats, and subject to different rules. This makes it very difficult to fully utilise this data to benefit patients. The goal of EHDEN is to make the large-scale analysis of health data in Europe a reality. The project aims to do this by building a federated data network of allowing access to the data of 100 million EU citizens standardised to a common data model. At the heart of the project will be a group of trained, certified small and medium-sized enterprises (SMEs) responsible for transforming the data owned by hospitals to the common data model. The data will remain under complete control of the original data owner, thereby ensuring ethical and local data privacy rules are respected.
EHDEN is part of IMI’s Big Data for Better Outcomes (BD4BO) programme.
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The EHDEN project has announced the creation of a new organisation that will support research carried out by partners in the EHDEN network and the wider research community beyond the lifetime of the IMI-funded project.###
The EHDEN project has a vision of the future wherein real-world data gathered during routine patient care can be used by the healthcare community to quickly generate high-quality insights that can improve care. Through a network of 98 data partners, the project has harmonised more than 400 million health records, transforming data from disparate databases to a ‘common data model’. This valuable resource has already been used to generate evidence on COVID19 vaccines and potential treatments, diabetes, and other indications.
The new organisation is being launched as a not-for-profit incorporated in the Netherlands, transitioning the project into a long-term sustainable operation from 2024. It will support studies into more diseases and new treatments through study-a-thons and research programmes, continue work on methodological and technical developments of the data and analytics infrastructure, ensure new data partners can join, and further grow the ‘EHDEN Academy’ training programme.
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Over 1 000 people have signed up to the EHDEN Academy, which provides the global scientific community with free educational resources on real world data and real world evidence.###
The aim of EHDEN is to make the large-scale analysis of health data in Europe a reality. At the heart of the project is a growing group of trained, certified small and medium-sized enterprises (SMEs) responsible for transforming data owned by hospitals, and others, to a common data model.
The training materials designed for these SMEs formed the basis of the EHDEN Academy, expanding to methods, skills and tools for working with real world data to generate real world evidence. The Academy was launched in April 2020 and has now attracted over 1 000 enrollees from 46 countries worldwide.
Today, the academy features 9 courses and a faculty of 10 expert instructors. The courses are freely available on demand and represent an important source of training for anyone who generates and uses data, works with it, or is involved in the development and use of analytical tools.
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- Read the article in full
The EHDEN and ConcePTION projects plus the ADVANCE/VAC4EU initiative will help the European Medicines Agency (EMA) gather real world data on COVID-19 vaccines and treatments once they are approved and being used in day-to-day clinical practice.###
EHDEN is already working with 25 data partners across Europe, to help them map COVID-19 data to a common data model. Now, it is set to collaborate with the EMA on the creation of a framework for multicentre cohort studies on the use of medicines in COVID-19 patients.
ConcePTION will collaborate with the EMA on a project that will collect data on the impact of COVID-19 in pregnancy and follow up the baby to monitor long-term outcomes in order to guide decision-making about vaccine indications, vaccination policies and treatment options for COVID-19 in pregnant women.
The international association VAC4EU (Vaccine Monitoring Collaboration for Europe) is set to work with the EMA to prepare for the monitoring of the benefits and risks of COVID-19 vaccines in Europe. VAC4EU was born out of IMI’s ADVANCE project.
‘The inclusion of EHDEN, ConcePTION and VAC4EU in the EMA’s work is testament not only to their scientific excellence but to their ability to adapt to the challenges posed by the COVID-19 pandemic,’ said IMI Executive Director Pierre Meulien. ‘I am confident that the projects will make a valuable contribution to this important initiative which is a key part of the global fight against the disease.’
The outcomes of the projects will feed into the work of EMA’s COVID-19 EMA pandemic Task Force (COVID-ETF) and EMA’s scientific committees, to ensure that the evidence is translated into scientific opinions on the optimal use of the medicines and vaccines concerned.
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EHDEN is offering to harmonise organisations’ clinical data to a standard model, while preserving patients’ privacy. This will make it easier to aggregate and jointly analyse data from different sources, something that is essential if we are to stop the outbreak and save lives.###
Since the start of the COVID-19 outbreak, hospitals and clinics around the world have captured vast amounts of data on the disease in patients’ healthcare records. This data, like most healthcare data, is stored in separate databases and different formats, and this drastically limits its usefulness for research. Now EHDEN is offering its expertise to organisations that have amassed data from COVID-19 patients and want help converting it to a standardised data format so that it can be used as part of wider studies on the disease. They have launched a ‘Call for data partners’ through which organisations with clinical data on COVID-19 can apply to benefit from this offer. Organisations have until 14 May to apply; a panel of bioinformatics experts will review the applications as they are received.
Successful applicants will receive a grant from EHDEN of up to EUR 50 000 to support the work they will need to carry out to assist with the data harmonisation process. They will also be invited to participate in COVID-19 research studies to accelerate our understanding of how to combat this pandemic and improve patient outcomes, as well as the ongoing study-a-thon.
‘We will provide financial and technical support to assist with harmonising your data to the OMOP common data model, with a view to linking Data Partners together and with researchers for quicker open science on SARS-CoV-2/COVID-19,’ the project says.
IMI’s EHDEN project has dramatically demonstrated the power of using clinical data in research by replicating, during a five-day ‘study-a-thon’, the results of a systematic review covering 20 years of research, and a multi-year clinical trial. The findings, which focus on the pros and cons of different types of knee replacement surgery, are published in the journal Lancet Rheumatology. ###They show that it is possible to harness clinical data (such as electronic health records) from different sources and use it to generate information that could help patients and doctors to make better decisions about their care.
‘Randomised controlled trials remain the gold standard for establishing efficacy,’ the EHDEN team concludes in the paper. ‘However, we feel that this study shows the value of real world evidence for complementing the evidence produced from randomised trials.’
‘This is particularly relevant for less common outcomes including safety and adverse reactions,’ adds one of the lead authors of the paper, Daniel Prieto-Alhambra of the University of Oxford, noting that the EHDEN team is keen to build on this experience. ‘Future study-a-thon’s are planned during the duration of EHDEN. Watch this space!’
- IMI’s news story
- The Lancet Rheumatology paper
- Watch a video on the EHDEN project and the study-a-thon (the presentation on the study-a-thon starts at 15:20)
- EHDEN website
IMI’s EHDEN project is launching a call for data custodians to apply for funding to map their health data to the Observational Medical Outcomes Partnership common data model (OMOP CDM).### EHDEN’s ambitious goal is to standardise more than 100 million patient records across Europe from different geographic areas and different data sources. Mapping this data to the OMOP CDM will facilitate their use for a variety of purposes, enhancing and accelerating research and healthcare decision-making for global benefit. In addition to funding, EHDEN data partners will benefit from being part of a thriving academic / medical network; more opportunities to participate in international studies; and improved interoperability and visibility of their data, among other things.
The call is currently in a draft form, and data custodians are invited to review the draft and provide feedback by 15 August. The EHDEN team will review feedback received and open the call for applications from 1 to 15 September.
IMI’s EHDEN project is looking for small and medium-sized enterprises (SMEs) to get involved in the project’s efforts to map and convert health data from diverse sources to a common model. The project has launched a pilot call for SMEs who want to get training and certification in this exciting new field. ###EHDEN’s ambitious goal is to standardise 100 million patient records across Europe covering different data source types, including hospitals, registries, and population databases. Transforming this data to the Observational Medical Outcomes Partnership (OMOP) common data model (CDM) is an immense task that EHDEN hopes will be carried out by a community of SMEs. SMEs selected through this pilot call will receive training in this and a certification that will highlight their expertise in this area. ‘We expect that those who receive training and certification through EHDEN will actually go on to perform mappings to help build the network,’ the project writes. ‘We also hope that they will become active members of the community, sharing ideas and possibly helping to develop or improve data mappings and analysis tools.’ According to the project, SMEs will also benefit from access to a larger market, the opportunity to build expertise in and contribute to a relatively new field, and the support of the wider EHDEN community. Finally, certified SMEs will receive invitations to additional training sessions as well as hackathons to improve the open source tools and other events.
- Details of how to apply can be found on the EHDEN website.
- Deadline for applications: 1 May 2019
ParticipantsShow participants on map
- Abbvie Inc, North Chicago, Illinois, United States
- Astrazeneca AB, Södertälje, Sweden
- Bayer Aktiengesellschaft, Leverkusen, Germany
- Boehringer Ingelheim Internationalgmbh, Ingelheim, Germany
- Celgene Management SARL, Couvet, Switzerland
- Eli Lilly And Company LTD, Basingstoke, United Kingdom
- H. Lundbeck As, Valby, Denmark
- Institut De Recherches Internationales Servier Iris, Suresnes, France
- Janssen Pharmaceutica Nv, Beerse, Belgium
- Novartis Pharma AG, Basel, Switzerland
- Pfizer Limited, Sandwich, Kent , United Kingdom
- Sanofi-Aventis Recherche & Developpement, Chilly Mazarin, France
- UCB Biopharma, Brussels, Belgium
Universities, research organisations, public bodies, non-profit groups
- Erasmus Universitair Medisch Centrum Rotterdam, Rotterdam, Netherlands
- Forum Des Patients Europeens, 1040, Belgium
- National Institute For Health And Care Excellence, Manchester, United Kingdom
- Stiftelsen WHO Collaborating Centre for International Drug Monitoring, Uppsala, Sweden
- Tartu Ulikool, Tartu, Estonia
- Universidade De Aveiro, Aveiro, Portugal
- University of Oxford, Oxford, United Kingdom
Small and medium-sized enterprises (SMEs) and mid-sized companies (<€500 m turnover)
- International Consortium For Healthoutcomes Measurement LTD, London, United Kingdom
- Odysseus Data Services Sro, Praha, Czech Republic
- Synapse Research Management Partners SL, Barcelona, Spain
- The Hyve BV, Utrecht, Netherlands
|Name||IHI funding in €|
|Erasmus Universitair Medisch Centrum Rotterdam||7 663 875|
|Forum Des Patients Europeens||236 250|
|International Consortium For Healthoutcomes Measurement LTD||341 875|
|National Institute For Health And Care Excellence||610 000|
|Odysseus Data Services Sro||731 875|
|Stiftelsen WHO Collaborating Centre for International Drug Monitoring||203 750|
|Synapse Research Management Partners SL||944 375|
|Tartu Ulikool||309 375|
|The Hyve BV||831 813|
|Universidade De Aveiro||626 250|
|University of Oxford||1 606 313|
|Total Cost||14 105 751|