This is the first version of the eHealth2 specification and its guideline. It defines an approach to preserve data sets exported from a cancer registry. It describes what elements need to be preserved to ensure future reuse of cancer registry export data. The eHealth2 specification defines an information package that aims to provide long-term usability and authentic interpretation of the content and context of the export created when the aggregator (international, national, researchers, etc.) requests data from the cancer registry. The eHealth2 specification is built upon ENCR, and JRC data calls in collaboration with Slovenian Cancer Registry and Slovenian National Archives.
The intended users of this document are:
a) Cancer registries that preserve their exports long-term (that is, for example, the case in Slovenian Cancer Registry) and aggregators of exports (ENCR at JRC).
b) Users of cancer registry data (researchers, health policy makers, etc.) who are interested in checking/researching the exports made.
c) State/local archives, which will eventually decide which export is archival (is submitted to the archive and kept indefinitely).
The guideline will be an evolving document, and thoroughly explained examples will be added continuously.
An example of the folder structure has been provided.