Actors
Who and which systems are involved? Make actors “real”, since details matter. Some example actors:
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Tiana contacts Amsterdam UMC’s local Research Support to ask whether knowledge and support in choosing and applying a terminology standard or multiple terminology standards.
During a support intake, the goal of applying such standards are discussed:
As the data collection will span several years and will include 2000 patients, these data are very valuable, also for other researchers outside if the project group. Applying such standards will facilitate interoperability so that others, humans or machines, can find, interoperate, and reuse them (source: I2: (Meta)data use vocabularies that follow the FAIR principles - GO FAIR (go-fair.org))
Research Support refers the researcher:
To internal experts. Colleagues who have knowldege on systems such as CDISC (SDTM, SEND, CDASH), SNOMED CT, LOINC, etc. Not sure how much hands-on experience is present within Amsterdam UMC.
To EVA Service Center (service desk Electronic Health Record (EHR)). In the EHR (Epic), the ICD-10 codes are partially applied to some data fields. It is possible to extract parts of the data that contains standardized variables.
Might be possible to map other standards to one chosen standards.
Might be possible to use existing codebooks → referral to Jeroen Beliën and Sander de Ridder for advice on the iCRF Generator
Might be possible to collect data with standardized CRFs from Castor EDC Form Exchange. Preferably forms that have been approved by Amsterdam UMC (working group in process of evaluation).
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