Accessing a Wealth of Medical Information

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A new €4.4 million EU project is using the latest web technologies to make the most of the wealth of medical information contained in electronic medical records. The project aims to aid decision-making for medical practitioners and improve safety in clinical research.

The Linked2Safety project will build a medical and clinical data management infrastructure, using privacy-aware, semantic technology.

At the forefront of technologies being deployed by the project, are researchers from the Digital Enterprise Research Institute (DERI) at the National University of Ireland Galway. Their task is to imbue meaning into the data contained within the European healthcare information space, which is fragmented and disparate, and connect that data. To do so, the project will use ‘linked-data’ and other sematic technologies developed by DERI.

“So much valuable information sits in seclusion in medical records in hospitals across Europe. They have the potential to significantly help and advance medical research, as well as improve health policies,” explains Ronan Fox, Health Care and Life Sciences Leader at DERI. “What we need to do is put in place a framework so that the information can be interconnected, this could lead to all kinds of possibilities. For example, within the context of the data governance, and legal and ethical framework created in Linked2Safety, individuals could be identified to join a clinical trial for a rare disease, whether they are in Ireland or Cyprus.”

In addition, using ‘linked data’, information contained in the records will be leveraged in clinical research for the early detection of potential patient safety issues. Such issues might be based on genetic data analysis and the extraction of the bio-markers associated with an identified type of an adverse event.

The Linked2Safety project will also support the effective organization and execution of clinical trials by allowing health carers and medical scientists to easily submit their own query and get homogenized access to high-quality medical data. Linked2Safety is an FP7 project funded by the European Commission under the area of ICT for health.

With over 140 researchers, DERI is the largest web science institute of its kind in the world, set up in 2003 with funding from Science Foundation Ireland and the National University of Ireland Galway.

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Ruth Hynes

Press & Information Executive / Feidhmeannach Preasa & Faisnéise

Marketing & Communications Office/Oifig Margaíochta & Cumarsáide

NUI Galway/OÉ Gaillimh

T: +353 91 495695

E: ruth.hynes@nuigalway.ie

About NUI Galway

NUI Galway* is one of Ireland’s foremost centres of academic excellence. Over 17,000 students undertake an extensive range of studies at the University, which is renowned for the quality of its graduates.

NUI Galway is a research-led University with internationally recognised expertise in areas including Biomedical Science and Engineering, Web Science, Human Rights, Marine Science, Energy and Environmental Science, Applied Social Sciences and Public Policy, and Humanities, in particular literature, theatre and Irish Studies.


For more information visit www.nuigalway.ie .

* The University's official title is National University of Ireland Galway. Please note that the only official abbreviation is "NUI Galway".

The Linked2Safety project

The Linked2Safety project - with the developed reference architecture, data protection framework, common EHR schema, lightweight semantic model and integrated platform - will facilitate the scalable and standardised semantic interlinking, sharing and reuse of heterogeneous EHR repositories. This in turn will provide healthcare professionals, clinical researchers and pharmaceutical companies’ experts with a user-friendly, sophisticated, collaborative decision-making environment. This will allow analysis of all the available data of the subjects, such as genetic, environmental and their medical history during a clinical trial leading to the identification of the phenotype and genotype factors that are associated with specific adverse events and thus early detection of potential patients’ safety issues. It will also enable subject selection for clinical trials through the seamless and standardized linking with hete rogeneous EHR repositories, providing advice on the best design of clinical studies.

Outcomes

It is expected that Linked2Safety will have multiple outcomes. One of them is the open, generic Linked2Safety Reference Architecture for enabling the reuse of semantically interlinked, interoperable EHR and
Electronic Data Capture (EDC) information resources in clinical trials design and execution advancing proactive patient safety and targeted patients selection. The project will also lead to the sustainable Linked2Safety Organizational, Data Governance and Business model  Furthermore it will result in the innovative Linked2Safety Data Privacy Framework that will reassure the compliance with the European and national legislation, with regard to the publication, access to and reuse of the patients’ personal and healthcare data. A scalable, modular and extensible platform will also be implemented that will enable pharmaceutica
l companies experts, healthcare professionals and patients to have efficient, homogenized access to Electronic Health Records across the enlarged Europe. A semantic annotation, sharing and alignment of the EHR and EDC artefacts with the globally available medical resources and vocabularies will be available
through the Linked2Safety Semantic EHR Model. Furthermore a demonstration of the use of the Linked2Safety framework will be shown through the implementation of a set of Research Showcases. Through the use of the project, a step-by-step cookbook will be created describing the Linked2Safety methodology outlining the guidelines for leveraging and reusing EHR. Finally the European academic, scientific and industrial stakeholders will have the ability to exploit the wide-scale dissemination of the project results

A theoretical case study example

A phase III clinical trial coordinator accessingLinked2Safety can identify the number of subjects that match his selection criteria from all the relevant data sources in the Linked2Safety platform. Then he can contact the Linked2Safety Governance body for help in accessing the subjects needed to include in the trial. The Governance body will review the research proposal and will decide if, and which of the subjects can be invited to volunteer for the trial. The Governance body will simply act as a mediator between the clinical trial coordinator requesting the access, and the principal investigator(s) of the study(ies). Subjects will only be conducted by the institute they have signed the consent form with. All ethical, legal or other issues will then need to be addressed directly between the phase III clinical trial coordinator requesting the data and the institution(s) that actually holds the data.

Official Project Data

Project Identifier: FP7-ICT-2011-7-288328

Project coordinator: INTRASOFT International S.A.

Website: www.linked2safety-project.eu

Timetable: from Oct. 2011 to Sep. 2014

Total cost: € 4,411,664

EC funding: € 3,099,000

Instrument: STREP

Project Coordinator:

Dr. Antonis Ramfos

Tel: +352 441012218

Email: antonis.ramfos@intrasoft-intl.com

Dissemination Leader:

Dr. Athos Antoniades
Tel: +357 22892685
Email: athos@cs.ucy.ac.cy

Partners

  1. INTRASOFT INTERNATIONAL S.A. (Luxembourg) - Project Coordinator
  2. NATIONAL UNIVERSITY OF IRELAND GALWAY (Ireland)
  3. THE UNIVERSITY OF MANCHESTER (United Kingdom)
  4. GOTTFRIED WILHELM LEIBNIZ UNIVERSITAET HANNOVER (Germa
  5. ny)

  6. CENTRE FOR RESEARCH AND TECHNOLOGY HELLAS (Greece)
  7. UNIVERSITY OF CYPRUS (Cyprus)
  8. SIVECO Romania S.A. (Romania)
  9. UBITECH Ltd. (Greece)
  10. ZEINCRO Hellas S.A. (Greece)
  11. HOSPICES CANTONAUX CHUV (Switzerland)
  12. THE CYPRUS INSTITUTE OF NEUROLOGY AND GENETICS [THE CYPRUS FOUNDATION FOR MUSCULAR DYSTROPHY RESEARCH] (Cyprus)

Publication Date

November 21st 2012

Source

Ronan Fox

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