Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Review
. 2017 Aug 7;12(1):137.
doi: 10.1186/s13023-017-0676-3.

European Reference networks for rare diseases: what is the conceptual framework?

Véronique Héon-Klin  1
Affiliations
Review

European Reference networks for rare diseases: what is the conceptual framework?

Véronique Héon-Klin. Orphanet J Rare Dis. .

Abstract

With the Cross-Border Healthcare Directive (2011/24/EU) a mandatory framework was established to foster cooperation on a voluntary basis, within European Reference Networks (ERNs). These networks are composed of centres and healthcare providers. The exchange of knowledge is a central issue in this context. A detailed literature survey was carried out to determine the most important factors affecting information and knowledge exchange, as well as learning, in networks and how this can be supported. New communication technologies are identified as key tools for the European Reference Networks (ERN). This study recommends the elaboration of a systematic knowledge use and knowledge generation plan. The data of this study suggests that the future ERNs will mediate the adoption of the digitised and networked information society in medical practice.

Keywords: Connective action; Connectivism; Cross-border networks in health care; Digitisation; European Reference networks; Health networks; Knowledge transfer and expertise.

PubMed Disclaimer

Conflict of interest statement

Authors‘information

This work has carried out within a Masters‘Programme on European Governance and Administration (MEGA). An internship of three months at the European Commission in the Unit preparing the implementation of the ERN preceded this work. The author, a medical doctor with a master of public health has been working in the field of rare diseases for many years.

Ethics approval and consent to participate

Not applicable.

Consent for publication

Not applicable.

Competing interests

The author declares that she has no competing interests.

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Figures

Fig. 1
Fig. 1
Overview of the different instruments used in current networks. Legend: Within the networks numerous instruments for communication and the exchange of knowledge are used. They can be devided into face-to-face and virtual instruments
See this image and copyright information in PMC

References

    1. Directive 2011/24/EU of the European Parliament and of the Council of 9 March 2011 on the application of patients’ rights in cross-border healthcare. 2011. http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2011:088:0045.... Accessed 15 June 2017.
    1. 2014/286/EU: Commission Delegated Decision of 10 March 2014 setting out criteria and conditions that European Reference Networks and healthcare providers wishing to join a European Reference Network must fulfil. 2014. http://eur-lex.europa.eu/legal-content/EN/TXT/PDF/?uri=CELEX:32014D0286&.... Accessed 15 June 2017.
    1. 2014/287/EU: Commission Implementing Decision of 10 March 2014 setting out criteria for establishing and evaluating European Reference Networks and their Members and for facilitating the exchange of information and expertise on establishing and evaluating such Networks. 2014. http://eur-lex.europa.eu/legal-content/EN/TXT/PDF/?uri=CELEX:32014D0287&.... Accessed 15 June 2017.
    1. Hennion S, Kaufmann O (Hrsg.). Unionsbürgerschaft und Patientenfreizügigkeit/Citoyenneté européenne et libre circulation des patients/EU citizenship and free movement of patients. Berlin Springer Verlag. 2014.
    1. Mossialos E, Permanand G, Baeten R, Hervey T. Health systems governance in Europe: the role of the European Union law and policy. Cambridge: Cambridge University Press; 2010.