Within the framework of the HealthyCloud project, consortium partners have compiled a list of commonly used terms in the field of health data research. This list, or glossary of key terms, was created as a living document meant to harmonise the work of the project, its authors hope that it will have implications beyond the project: this glossary could represent an important step toward harmonising the language used by other projects and stakeholders in this field.
Glossary
The field of health data is changing drastically, and many stakeholders have first-hand experience of the challenges to arriving at a common understanding. At times, misunderstandings can emerge from using the same terms to express different concepts or when calling the same concepts by different names. Harmonising this approach offers a concrete solution for fostering clear communication. With this in mind, Juan González, one of Healthy Cloud’s coordinators says:
“HealthyCloud gathers people from a broad variety of health research communities. To facilitate the exchange, we started by setting a common language for everybody to understand. This is what we collected in the HealthyCloud’s Glossary”
Juan González, Healthy Cloud Co-coordinator
A series of glossary working group calls were organised to inform this glossary. Several participants active in the field of health data convened to work together to discuss and dissect the different definitions until a common vision was agreed upon. These discussions with leaders in the field help to ensure that the terms were considered in depth and incorporated current usage and connotation.
“Building the HealthyCloud Glossary has been an interesting and enriching process, allowing us and the other HealthyCloud partners involved to learn from each other’s different expertise“
Shona Cosgrove, Project Researcher – EU health information system unit, Sciensano
The glossary currently counts with more than 50 terms that range from common terms like ‘data’ to more hereto unregulated terms like ‘data’ and ‘FAIR (findability, accessibility, interoperability, reuse of resources)’, to ethics-related terms such as ‘data altruism’ and ‘consent’, in addition to more terms like ‘cloud computing’ and ‘federated learning’. The term of ‘health data hub’, which is also a key term within the framework of the HealthyCloud project is defined and includes minimum inclusion criteria, which is crucial for defining a united way forward. The glossary also illustrates its timeliness by considering and integrating a section on artificial intelligence-related terms and terms that specifically apply within the scope of HealthyCloud.
This is the second version of the glossary, and this updated version includes cahnges from the most recent glossary working group. It specifically takes steps to align its terms with the recently published Proposal for a Regulation on the European Health Data Space (EHDS). This glossary represents a living document that will be regularly updated with new terms and any modifications to existing terms, if needed.
Do you work in the health data field? Do you want to contribute to our glossary?
Please get in touch with HealthyCloud@sciensano.be for more information on next calls for glossary working groups.