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Using linked administrative and disease-specific databases to study end-of-life care on a population level

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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. Conclusion: 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.
Keywords
End-of-life, Data linkage, Administrative databases, Disease-specific databases, Full-population, CANCER-PATIENTS, HEALTH-CARE, INDICATORS, SERVICES, QUALITY, RECORDS, CLAIMS

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Chicago
Maetens, Arno, Robrecht De Schreye, Kristof Faes, Dirk Houttekier, Luc Deliens, Birgit Gielen, Cindy De Gendt, Patrick Lusyne, Lieven Annemans, and Joachim Cohen. 2016. “Using Linked Administrative and Disease-specific Databases to Study End-of-life Care on a Population Level.” Bmc Palliative Care 15.
APA
Maetens, A., De Schreye, R., Faes, K., Houttekier, D., Deliens, L., Gielen, B., De Gendt, C., et al. (2016). Using linked administrative and disease-specific databases to study end-of-life care on a population level. BMC PALLIATIVE CARE, 15.
Vancouver
1.
Maetens A, De Schreye R, Faes K, Houttekier D, Deliens L, Gielen B, et al. Using linked administrative and disease-specific databases to study end-of-life care on a population level. BMC PALLIATIVE CARE. 2016;15.
MLA
Maetens, Arno, Robrecht De Schreye, Kristof Faes, et al. “Using Linked Administrative and Disease-specific Databases to Study End-of-life Care on a Population Level.” BMC PALLIATIVE CARE 15 (2016): n. pag. Print.
@article{8502135,
  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. 
Conclusion: 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.},
  articleno    = {86},
  author       = {Maetens, Arno and De Schreye, Robrecht and Faes, Kristof and Houttekier, Dirk and Deliens, Luc and Gielen, Birgit and De Gendt, Cindy and Lusyne, Patrick and Annemans, Lieven and Cohen, Joachim},
  issn         = {1472-684X},
  journal      = {BMC PALLIATIVE CARE},
  language     = {eng},
  pages        = {10},
  title        = {Using linked administrative and disease-specific databases to study end-of-life care on a population level},
  url          = {http://dx.doi.org/10.1186/s12904-016-0159-7},
  volume       = {15},
  year         = {2016},
}

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