Promotion of the reuse of scientific health data has been investigated
UC3M/DICYT Facilitating and promoting that scientific health data is guided by the FAIR principles (Findable, Accessible, Interoperable, Reusable). This is the objective of FAIR4Health, the European scientific project in which researchers from the UC3M have participated, with the aim of demonstrating the potential impact that such a strategy may have on improving various scientific results.
One of the most important challenges faced by data-intensive science is facilitating the progress of knowledge by helping with the discovery, findability, accessibility, integration and analysis of scientific data. The FAIR principles are intended to influence institutions in order to help them share research data in a way that is appropriate and useful for other researchers. Due to the nature of health data, its exchange and reuse for research is limited by ethical, legal and technical restraints.
The cost for the European Union of non-FAIR research data is approximately 10.2 billion Euros each year, according to an analysis by the European Commission. “This happens because the money is invested in research, but the data that is collected (one of the most expensive parts of research) remains in each working group, without metadata, without being systematised or described—they are not shared, cannot be found and reused for further research,” explain two researchers taking part in FAIR4Health, Tony Hernández and Eva M. Méndez from the UC3M’s Department of Library and Information Sciences.
“FAIRification” of the data
An analysis of the main restrictions and possible ways of enabling the implementation of a FAIR data policy in EU research institutions has been carried out within the framework of this research project. To this effect, a “FAIRification” process has been implemented by the GO FAIR initiative, which addresses the ethical, legal and technical aspects of health data.
Just as the data is checked for accuracy, researchers believe that it can be “fairicated”, in other words, checked to see if it complies with the FAIR principles. In order to do so, “fairification” tools for health data have been developed within the framework of the FAIR4Health project. These tools consist of independent desktop applications that were developed to cure and validate data (Data Curation Tool) and to de-identify and anonymise data (Data Privacy Tool).
The FAIR4Health solution has been validated by two case studies. The first consisted of analysing the impact of multimorbidity patterns (having at least two chronic diseases) and polypharmacy (taking more than 3 medicines at the same time) on mortality rate (at 6 months) and cognitive decline in older people.
The second case study aimed to develop, validate and assess the accuracy of a clinical decision support tool which was used to predict Chronic Obstructive Pulmonary Disease (COPD) patients’ readmission after being discharged.
The @FAIR4Health Improving Health Research in the EU through FAIR Data project, which recently came to an end, has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement number 824666. The consortium, led by the Virgen del Rocío University Hospital from the Andalusian Health Service with the participation of the UC3M, has relied on 17 partners belonging to health research organisations, businesses and universities in eleven different countries: Germany, Austria, Belgium, Spain, Italy, the Netherlands, Portugal, the United Kingdom, Serbia, Switzerland and Turkey.