In order to facilitate data harmonization, ImmPort has introduced standard vocabularies in the data templates to encourage data providers to use standard terms.
Ethical approval was not required for this research in any of the countries described, as respondents participating in the expert data template and provider interviews were approached in their professional function only and no sensitive personal information was collected.
The Excel data template with its resultant data set was further processed by an anonymizer, which substituted a code number for the locally available surgical accession number.
We used a general inductive approach to data analysis, in which emerging themes related to self-management support were identified through examination of the completed data template containing evidence from 13 countries.
Once it was detected that there were differences in the time and accuracy associated with the templates' use, an analysis was made of the data crossing template by template, trying to identify the differences.
A limitation of our study is that, despite the use of a data template and the operationalisation of self-management support, country-specific descriptions of support approaches differed in their level of detail and thus some approaches might be relatively underrepresented in this paper.
All of the structured data templates launched by Jotspot in July 2006 have been stripped out.
Yes there are hiccups – who inputs the data, the template to use etc – but it is proving to be the most powerful tool, for both the families and professionals.
The data abstraction template is available in Appendix S1.
The data extraction template is available from the authors on request.
