Joint DCC/ERPANET Workshop: Long-term Curation and Preservation of Medical Databases

13 - 14 October 2005
Calouste Gulbenkian Foundation, Lisbon


Enabling access to and re-use of digital information is an integral part of medical research and health-service provision and is essential for enabling accountability. This workshop explored the ways that practitioners can support accessibility and reusability of medical databases over time. It also provided an opportunity for information professionals, medical practitioners, commercial developers, students, and researchers to network with colleagues, learn about current developments, discuss their own experiences, and to identify risks and challenges that are likely to emerge. Presentations and panel discussions offered participants cross-disciplinary perspectives on the long-term preservation of medical databases.

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The workshop was delivered over three broad sessions:

  • Creating, Describing and Sharing Medical Databases
  • Curating Medical Databases
  • Re-using Medical Databases

Each session was chaired by a practitioner in the field. They began by placing the topic into the context of digital curation and providing references to international efforts in the area. Following this introduction, each session highlighted specific tools, practical approaches and emerging standards in the form of presentations. Each session then concluded with an open question period which was moderated by the session chair.

Key themes included:

  • Tools and standards to help create, curate and reuse medical databases
  • Description techniques that may help to ensure the long-term usability of digital medical information within databases
  • Overview of curation and preservation activities being undertaken internationally

Creating, Describing and Sharing Medical Databases

In this session, concepts of creating quality content that can be used and shared over time were explored. Some of the issues that were examined include adhering to standards, interoperability, data cleansing, and normalisation.

Curating Medical Databases

During this session, some of the issues that may affect the long-term usability of medical databases were examined. Some of the issues raised include storage, roles and responsibilities, selection, and migration.

Re-using Medical Databases

In this session, factors affecting the reuse of medical databases over time were explored. Some of the topics discussed were security, authenticity, and confidentiality.

Programme committee:

  • Niklaus Butikofer, Co-Director ERPANET
  • Alan Doyle, Science Programme Manager, Wellcome Trust
  • Mariella Guerico, Università degli Studi di Urbino Carlo Bo
  • Hans Hofman, Nationaal Archief van Nederland
  • Seamus Ross, Associate Director DCC Services and Director, HATII, University of Glasgow
  • Allan Sudlow, Programme Manager, Research Management Group, Medical Research Council


This event was held at the Calouste Gulbenkian Foundation [external], Lisbon, Portugal. Find out how to get to the Calouste Gulbenkian Foundation [external].


Registration fees were £75 for DCC Associates Network members and £125 for non-members. These fees included all workshop materials and handouts, lunch on 14 October and refreshments.

Membership of the DCC Associates Network is FREE! For more information on becoming a member, see our Associates Network page.

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