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Sharing data: Health Data

Sharing data on COVID-19

Make your COVID-19 data accessible to the scientific community by releasing them in public databases along with respective metadata.

Metadata

Metadata are “data about data”, I.E. the information a dataset must be provided with in order to correctly interpret, manage and store it over time. Metadata generally include information on the methodology used to collect the data, on instrumental procedures, definitions of variables, units of measurement, indications on file formats, software used to collect and/or process the data and more. Metadata can be collected in simple text files and archived together with the dataset.

Researchers are strongly encouraged to use standard metadata, where they exist. It is strongly recommended to start defining and collecting metadata from the very beginning of the research project.

Metadata for health data should be provided as much and as frequently as possible. One of the most popular framework for this aim is given by SNOMED CT (SNOMED Clinical Terms). It is a systematically organized computer processable collection of medical terms providing codes, terms, synonyms and definitions used in clinical documentation and reporting. SNOMED CT is considered to be the most comprehensive, multilingual clinical healthcare terminology in the world. SNOMED CT is maintained and distributed by SNOMED International, an international non-profit standards development organization, located in London, UK. SNOMED International is the trading name of the International Health Terminology Standards Development Organisation (IHTSDO), established in 2007.

More information on standards and formats for metadata is collected in the FAIRsharing.org resource.

Repositories

To identify the most suitable resource for sharing your data, we suggest using tools such as FAIRsharing where, using the ‘health data’ keyword.

Local Repositories

Some local repositories are available at department, university, institute level.

We suggest contacting your Data Stewardship or IT service for more information and support.

Suggest us a Local Repository by filling in this form. Increase your visibility, create synergies with other laboratories and let the impact of your research grow.