Overview of the data environments

Tabel hier In case you are going to work with encrypted routine (care) data, ELAN offers two distinct environments: one within the LUMC and the other through Remote Access (RA) provided by Statistics Netherlands (SN, CBS in Dutch). Please read the information below for the distinction between the two environments.

Both environments provide access to encrypted GP-care data from affiliated GPs within the GP research partnership of ELAN. In the Netherlands, practitioners keep track of their patient’s health in electronic patient records (EPR) called a Huisartsen Informatie Systeem (HIS). For more information on how the health records are transformed into different data files, click here.

Internal (LUMC) environment

Within the internal (LUMC) environment, researchers can get access to encrypted GP-care data. These comprise almost 1,2 million patients from 150 affiliated GPs in the ELAN region. A Trusted Third Party (STIZON) collects these health records and stores them in separate files on a data server with a Microsoft Azure Datawarehouse. Subsets of this data are constructed according to the wishes/requirements of the diverse ELAN research projects. These subsets are made by the ELAN-datamanager in the (remote) data environment of our TTP and then transferred via VPN to the LUMC. Here, in the LUMC environment, they are stored in secure folders on the I-drive, only accessible to members of the research project.

Precison recruitement (tile projects) The internal data infrastructure also includes the opportunity for precision recruitment via STIZON as trusted third party. For this the ELAN-datamanager creates (in cooperation with the researcher) a specific selection of pseudo-patient-IDs and transfers these back to STIZON. STIZON will depseudonymize the IDs and provide the GP with a recognizable list of patients. The GP can access such a list by means of a secure data-portal. In this portal, the GP must select a ’tile’ behind which the patient selection is visible, these projects are therefore also called ’tile projects'.

For more information on the steps in this process click here.

TO DO: Margots file met hiaten: Procedures: discuss dataset with data-manager, sign DTA, access PHEG I-drive, communicate updates with ELAN-team and WP-holder, submit paper to scientific board, share syntaxes, archive (no information in current guideline) Possibility to go ‘back to the GP’ as there are pseudonymized data (see more information in governance document), information on ‘tegelproject’ or precision medicine (no information in current guideline)

External (CBS-RA) environment

The external data infrastructure is hosted on the CBS servers. The CBS-RA environment of ELAN offers researchers a unique data-infrastructure in which researchers are able to combine data from multiple caregivers (i.e. GP, hospital, mental health care, Municipal Health Services, social care and perinatal data) with the SN-microdata (SN=Statistics Netherlands=CBS). Within this infrastructure, researchers operate from within projects. Every project has access to different subsets of datasets. Dutch descriptions on all datasets being maintained by Statistics Netherlands can be found here. If researchers require access to a dataset not made available in their project, they can contact the data manager.

Currently, there are 6 projects available for researchers to work from.

Margot: bovenstaande verzetten naar blz 'external environment'? Lisette: Ik stel voor een aparte repo te maken voor de samengestelde variabelen!