Using linked administrative and disease-specific databases to study end-of-life care on a population level.
BMC Palliat Care
; 15(1): 86, 2016 Oct 18.
Article
em En
| MEDLINE
| ID: mdl-27756296
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.Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Contexto em Saúde:
1_ASSA2030
/
6_ODS3_enfermedades_notrasmisibles
Base de dados:
MEDLINE
Assunto principal:
Qualidade da Assistência à Saúde
/
Assistência Terminal
/
Sistema de Registros
/
Armazenamento e Recuperação da Informação
Limite:
Humans
País/Região como assunto:
Europa
Idioma:
En
Revista:
BMC Palliat Care
Ano de publicação:
2016
Tipo de documento:
Article