Useful resources for the realization of protocols with SIDIAP data
A small guide, in which the researcher will find detailed information about the different parts that a protocol should contain, as well as specific questions related to SIDIAP data. You will also find links to sources of information that explain or complement some of the ideas.
Although these are studies with anonymised data, mention must be made of the Data Protection Law in force:
Regulation 2016/679 of the European Parliament and of the Council of 27 April 2016, on Data Protection, and Organic Law 3/2018 of 5 December, on the protection of personal data and guarantee of digital rights.
The confidentiality of the data when working with SIDIAP data is always guaranteed by means of a coding system of the identifying variables of the individuals that define the population under study. The research team does not have access to this coding system.
In the event of SIDIAP having to cross-reference data with an external source, it asks an external agent (a third party) –who is always a member of SISAP (Catalan Health Institute) and who does not have access to the information relating to the clinical history of the project population but does have access to an intermediate platform with identifiers and codes– to generate these identifiers related to the codes of the population of interest. Subsequently, the databases are cross-referenced and transferred to SIDIAP.
The process of anonymization and extraction of the free text is as follows:
In any means of dissemination of results, the source of data collection must be specified in the material and methods section.
Source of data collection: SIDIAP (Information System for the Development of Research in Primary Care)..
For quotes in English:SIDIAP (Information System for Research in Primary Care).
In the event that the project has used other additional sources of information, the source used and the institution responsible for it must be stated.
In some cases, journals may ask if we have a Data Sharing Agreement; the possible response to the journal would be:
"The data from this study cannot be made publicly available for legal reasons. According to Spanish law and the IDIAPJGol Ethical Review Board, it is prohibited to publicly share data with personal information".