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Monday, December 3, 2012

European data assets catalogue & eHealth Infrastructure - analyses of progress

We'll be looking at access to European patient-level data for research purposes over the next few months and have hit on a couple of online resources we thought worth sharing with you.

The first is a listing of data assets by country (and some international assets) with clear concise descriptions of their content.This is a great starting place for anyone looking to understand the large-scale datasets which might support various kinds of clinical, epidemiological and commercial research. The below is an excerpt, the entry for the Netherlands, to whet your appetite:

Health records
  • Integrated Primary Care Information (IPCI) information from electronic patient records of 150 GPs covering more than 1 000 000 patients
  • Pharmo Independent research organization for drug use and outcomes (including cardiovascular, metabolic disease, oncology and autoimmune disease, respiratory disease, and mother and child health). Overall it covers 2 million residents in the Netherlands and around 200 000 patients linked to GP patient records. Other data includes:
    • Community Pharmacy database (CPD)
    • Clinical Laboratory File (CLF)
    • General Practitioner database (GPD)
    • Dutch Pathology Registers (PALGA)
    • Hospital Pharmacy database (HPD)
    • Dutch mortality statistics (CBG)
    • National Dutch Hospital Registration (LMR)
    • Perinatal Registry (PRN)
    • Eindhoven Cancer registration (IKZ)
Health statistics
  • GIP database from Health Care Insurance Board (Free online) covering outpatient drug utlization for 85% of population
The second resource is a series of reports by country, together with a summary across the continent, of eHealth Infrastructure initiatives in Europe. The final report is dated January 2011 but the speed with which these state and EU funded initiatives are able to progress is such that we suspect these analyses still stand and can be considered fairly current. The summary report is a good document to start with to understand the scope and purpose of the analysis but the individual country briefs are invaluable in their discussion of, for example, the data integration issues thrown up by Spain's regional administration, or the legal impediments to cross-border data sharing.

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