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Making sense of big data in health research: towards an EU action plan

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Auffray, Charles, Balling, Rudi, Barroso, Inês, Bencze, László, Benson, Mikael, Bergeron, Jay, Bernal-Delgado, Enrique, Blomberg, Niklas +49 more·2016·Genome Medicine
DOI 10.1186/s13073-016-0323-yPMC PMC4919856
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Abstract

Medicine and healthcare are undergoing profound changes. Whole-genome sequencing and high-resolution imaging technologies are key drivers of this rapid and crucial transformation. Technological innovation combined with automation and miniaturization has triggered an explosion in data production that will soon reach exabyte proportions. How are we going to deal with this exponential increase in data production? The potential of "big data" for improving health is enormous but, at the same time, we face a wide range of challenges to overcome urgently. Europe is very proud of its cultural diversity; however, exploitation of the data made available through advances in genomic medicine, imaging, and a wide range of mobile health applications or connected devices is hampered by numerous historical, technical, legal, and political barriers. European health systems and databases are diverse and fragmented. There is a lack of harmonization of data formats, processing, analysis, and data transfer, which leads to incompatibilities and lost opportunities. Legal frameworks for data sharing are evolving. Clinicians, researchers, and citizens need improved methods, tools, and training to generate, analyze, and query data effectively. Addressing these barriers will contribute to creating the European Single Market for health, which will improve health and healthcare for all Europeans.

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Authors
Auffray, C., Balling, R., Barroso, I., Bencze, L., Benson, M., Bergeron, J., Bernal-Delgado, E., Blomberg, N., Bock, C., Conesa, A., Del Signore, S., Delogne, C., Devilee, P., Di Meglio, A., Eijkemans, M., Flicek, P., Graf, N., Grimm, V., Guchelaar, H.-J., Guo, Y.-K., Gut, I. G., Hanbury, A., Hanif, S., Hilgers, R.-D., Honrado, Á., Hose, D. R., Houwing-Duistermaat, J., Hubbard, T., Janacek, S. H., Karanikas, H., Kievits, T., Kohler, M., Kremer, A., Lanfear, J., Lengauer, T., Maes, E., Meert, T., Müller, W., Nickel, D., Oledzki, P., Pedersen, B., Petkovic, M., Pliakos, K., Rattray, M., i Màs, J. R., Schneider, R., Sengstag, T., Serra-Picamal, X., Spek, W., Vaas, L. A. I., van Batenburg, O., Vandelaer, M., Varnai, P., Villoslada, P., Vizcaíno, J. A., Wubbe, J. P. M., & Zanetti, G.
Affiliations
  • Lyon 1 Université (FR)
  • University of Luxembourg (LU)
  • Wellcome Sanger Institute (GB)
  • Semmelweis University (HU)
  • Linköping University (SE)
  • Pfizer (United States) (US)
  • ELIXIR (GB)
  • Austrian Academy of Sciences (AT)
  • University of Florida (US)
  • Leiden University Medical Center (NL)
  • University Medical Center Utrecht (NL)
  • European Bioinformatics Institute (GB)
  • Saarland University (DE)
  • Forschungszentrum Jülich (DE)
  • Barcelona Institute of Science and Technology (ES)
  • TU Wien (AT)
  • Association of the British Pharmaceutical Industry (GB)
  • Universitätsklinikum Aachen (DE)
  • Synapse (Spain) (ES)
  • King's College London (GB)
  • National and Kapodistrian University of Athens (GR)
  • Vitromics (Netherlands) (NL)
  • Pfizer (United Kingdom) (GB)
  • Max Planck Institute for Informatics (DE)
  • Janssen (Belgium) (BE)
  • University of Manchester (GB)
  • Centre National de la Recherche Scientifique (FR)
  • Linguamatics (United Kingdom) (GB)
  • KU Leuven (BE)
  • SIB Swiss Institute of Bioinformatics (CH)
  • Fraunhofer Institute for Molecular Biology and Applied Ecology (DE)
  • Integrated Biobank of Luxembourg (LU)
  • Hospital Clínic de Barcelona (ES)
  • Center for Advanced Studies Research and Development in Sardinia (IT)
Corresponding author
  • Auffray, Charles
  • Balling, Rudi
ORCID
Venue
Genome Medicine
Publisher
Springer Science and Business Media LLC
Published
2016-06-23
Volume
8
Issue
1
Pages
71-71
ISSN
1756-994X (ISSN-L)
DOI
10.1186/s13073-016-0323-y
PMC
PMC4919856
OpenAlex
W2473046424
Cited by
286
References
4
Citations by year
2026: 2 · 2025: 10 · 2024: 22 · 2023: 25 · 2022: 14 · 2021: 32 · 2020: 37 · 2019: 43 · 2018: 64 · 2017: 30 · 2016: 6 · 2015: 1
FWCI
81.17
Type
journal article
Language
en
Update notices
correction (2016-11-07)
Open access
Licence
cc-by
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  • Apollo (cc-by)
  • RWTH Publications (RWTH Aachen)
Funders
  • Wellcome Trust (WT 098051, 257082, 115372)
  • European Molecular Biology Laboratory
  • European Commission (603160, 602525, 262055, 278433, 270089, 306000, 288028, 115010, 201418, 282510, 644753, 115568, 223367, 257082, 242189, 305397, 321567, HORIZON2020, 305564, 115446, H2020, 269978, 211601, 260558, 305280, 305626, 115525, 664691, 602552, 261357, 115749, 305033, 291814, 223411, 242135, 115372, 115621, 611388, 634143, 291728)
  • Innovative Medicines Initiative (#115372, 115,749, 115446, H2020, n°115525, ND4BB, 115010, 115525)
  • Directorate-General for Research and Innovation (262055, 270089)
  • Horizon 2020 Framework Programme (115372, 602525, 644753, 634143)
  • Joint Research Centre
Topics
  • Health Sciences › Health Professions › Health Information Management › Electronic Health Records Systems
  • Social Sciences › Decision Sciences › Information Systems and Management › Big Data Technologies and Applications
  • Physical Sciences › Computer Science › Information Systems › Research Data Management Practices
Keywords
data sharing, data harmonization, genomic medicine, health data infrastructure, data protection law, mobile health data, whole genome sequencing, health data fragmentation, data interoperability
MeSH terms
European Union, Health Plan Implementation, Humans, Databases, Factual, Information Dissemination, Biomedical Research

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