[MA 2023 30] Towards FAIR data in intensive care research
Intensive Care (adults), Amsterdam UMC, location AMC
Proposed by: Laura Hagens [l.a.hagens@amsterdamumc.nl]
Introduction
At the department of Intensive Care a lot of patient data is collected, for clinical care, but also for research purposes. The FAIR principle - Findable Accessible Interoperable Resuable (FAIR) – is about making data findable, accessible, interoperable and reusable, for humans and computers [1]. An example of a large ICU data initiative with a FAIR data view is the AmsterdamUMCdb [2,3]. In registries about the quality of care, this principle is already implemented, for example in the NICE registry [4]. For clinical research we are standing at the start and willing to move to FAIR data.
Data FAIRification can be performed from start (de novo fairification) or after collecting the data (backward fairification) [5]. Backward fairification is not desired, since it is time consuming, costly and can often not be reused. Therefore we aim at de-novo fairification of a part of the ICU clinical research in the near future.
Description of the SRP Project/Problem
At this moment data is collected directly from the patient file by each researcher for each research project specific. This makes performing clinical research a laborious and time consuming task, with a lot of duplication of work, few reuse and sparse interoperability between projects. Data dictionaries are introduced since a couple of years and create awareness about proper data collection, however the FAIR principle is far from involved in collecting patient data and each researcher individually designs its own datadictionary.
To progress to FAIR data in ICU research some steps are needed, first in this process is to find out what is already done. Subsequently steps to implement in our situation should be defined. To optimally use FAIR, common data models are necessary. Furthermore, the digital infrastructure should be capable of collecting and using data in a FAIR way.
Research questions
To what extent does the content of clinical models and research models overlap?
To what extent can clinical models be used for capturing research data?
How can users be supported in selecting or creating research data models?
Expected results/Methods
An overview of already used clinical models in ICU.
A guidance for the ICU research department on the use of clinical models for ICU research.
Time period (usually 7 months)
Can be discussed.
Contact
Laura Hagens (l.a.hagens@amsterdamumc.nl)
Dr. Dave Dongelmans, PI (d.a.dongelmans@amsterdamumc.nl)
References
[1] https://www.go-fair.org/fair-principles/
[2] https://amsterdammedicaldatascience.nl/amsterdamumcdb/
[3] Thoral, Patrick J et al. “Sharing ICU Patient Data Responsibly Under the Society of Critical Care Medicine/European Society of Intensive Care Medicine Joint Data Science Collaboration: The Amsterdam University Medical Centers Database (AmsterdamUMCdb) Example.” Critical care medicine vol. 49,6 (2021): e563-e577. doi:10.1097/CCM.0000000000004916
[4] https://stichting-nice.nl/dd/#start
[5] Kersloot, Martijn G et al. “De-novo FAIRification via an Electronic Data Capture system by automated transformation of filled electronic Case Report Forms into machine-readable data.” Journal of biomedical informatics vol. 122 (2021): 103897. doi:10.1016/j.jbi.2021.103897
General information about research in the ICU of Amsterdam UMC:
The mission statement of this department is to advance the understanding of intensive care medicine (ICM) through basic and applied research, and to translate innovations into (cost–)effective approaches for disease prevention, diagnosis and treatment.
Goals and ambition – to be an internationally renowned center of research at a clinical level (in the department of ICM), in close collaboration with other (inter–)national departments and laboratories of ICM.
We are an enthusiastic research group with 20-25 PhD-students and 3 post-docs, under the supervision of 5 principal investigators. Numerous bachelor’s and master’s students from different origins (biomedical science, technical medicine and medicine) are performing their internships at our department. A lot of research is performed directly at the bedside with very much relevance to the patient. In this project you can help the researchers, and thereby the patient, in improving clinical research.