title: Using linked administrative and disease-specific databases to study end-of-life care on a population level.
abstract: BACKGROUND
  The use of full-population databases is under-explored to study the use, quality and costs of end-of-life care. Using the case of Belgium, we explored: (1) which full-population databases provide valid information about end-of-life care, (2) what procedures are there to use these databases, and (3) what is needed to integrate separate databases.
  
  
  METHODS
  Technical and privacy-related aspects of linking and accessing Belgian administrative databases and disease registries were assessed in cooperation with the database administrators and privacy commission bodies. For all relevant databases, we followed procedures in cooperation with database administrators to link the databases and to access the data.
  
  
  RESULTS
  We identified several databases as fitting for end-of-life care research in Belgium: the InterMutualistic Agency's national registry of health care claims data, the Belgian Cancer Registry including data on incidence of cancer, and databases administrated by Statistics Belgium including data from the death certificate database, the socio-economic survey and fiscal data. To obtain access to the data, approval was required from all database administrators, supervisory bodies and two separate national privacy bodies. Two Trusted Third Parties linked the databases via a deterministic matching procedure using multiple encrypted social security numbers.
  
  
  CONCLUSIONS
  In this article we describe how various routinely collected population-level databases and disease registries can be accessed and linked to study patterns in the use, quality and costs of end-of-life care in the full population and in specific diagnostic groups.
authors.affiliation: End of Life Care Research Group, Vrije Universiteit Brussel (VUB), Brussels, Belgium & Ghent University, Ghent, Belgium. Arno.maetens@vub.ac.be.
authors.forename: Arno
authors.identifier: http://orcid.org/0000-0002-4448-6036
authors.initials: A
authors.lastname: Maetens
authors.affiliation: End of Life Care Research Group, Vrije Universiteit Brussel (VUB), Brussels, Belgium & Ghent University, Ghent, Belgium.
authors.forename: Robrecht
authors.initials: R
authors.lastname: De Schreye
authors.affiliation: End of Life Care Research Group, Vrije Universiteit Brussel (VUB), Brussels, Belgium & Ghent University, Ghent, Belgium.|Interuniversity Centre for Health Economics Research (I-CHER), Ghent University, Ghent, Belgium.
authors.forename: Kristof
authors.initials: K
authors.lastname: Faes
authors.affiliation: End of Life Care Research Group, Vrije Universiteit Brussel (VUB), Brussels, Belgium & Ghent University, Ghent, Belgium.
authors.forename: Dirk
authors.initials: D
authors.lastname: Houttekier
authors.affiliation: End of Life Care Research Group, Vrije Universiteit Brussel (VUB), Brussels, Belgium & Ghent University, Ghent, Belgium.|Department of medical oncology, Ghent University Hospital, Ghent, Belgium.
authors.forename: Luc
authors.initials: L
authors.lastname: Deliens
authors.affiliation: InterMutualistic Agency, Brussels, Belgium.
authors.forename: Birgit
authors.initials: B
authors.lastname: Gielen
authors.affiliation: Belgian Cancer Registry, Brussels, Belgium.
authors.forename: Cindy
authors.initials: C
authors.lastname: De Gendt
authors.affiliation: Statistics Belgium, Brussels, Belgium.
authors.forename: Patrick
authors.initials: P
authors.lastname: Lusyne
authors.affiliation: Interuniversity Centre for Health Economics Research (I-CHER), Ghent University, Ghent, Belgium.
authors.forename: Lieven
authors.initials: L
authors.lastname: Annemans
authors.affiliation: End of Life Care Research Group, Vrije Universiteit Brussel (VUB), Brussels, Belgium & Ghent University, Ghent, Belgium.
authors.forename: Joachim
authors.initials: J
authors.lastname: Cohen
mesh_terms: D000544:Alzheimer Disease / Q000191:economics / Q000628:therapy; D001530:Belgium; D016208:Databases, Factual; D017048:Health Care Costs; D006801:Humans; D016247:Information Storage and Retrieval / Q000379:methods*; D009369:Neoplasms / Q000191:economics / Q000628:therapy; D029424:Pulmonary Disease, Chronic Obstructive / Q000191:economics / Q000628:therapy; D011787:Quality of Health Care; D012042:Registries; D013727:Terminal Care / Q000191:economics / Q000706:statistics & numerical data*
keywords: Administrative databases; Data linkage; Disease-specific databases; End-of-life; Full-population