AG Validity and linkage of secondary data

Brief description

Although secondary health-related data (e.g. data from social security institutions or other health care benefit data) are increasingly used for research purposes, the amount of methodological work is still limited. Validation studies are necessary, however, in order to assess the possibilities and limitations of these data. For validation with an external gold standard, a personal link with other data sources is inevitably necessary. Therefore, validation and linkage are more or less not to be considered independently from each other. There are a number of studies on personal linkage, but methodological publications are rare and a compilation of best practice examples is still missing.

Possible topics for validation concern:

• What kind of studies on the validity of secondary data are available so far?
• What possibilities exist for validation?
• Which data are suitable as gold standard, and which are not?
• Which problems exist and how can they be solved?

Possible topics for linkage concern:

• What primary data has been linked to secondary data so far?
• What are data protection challenges and which solutions exist?
• Which secondary data with health reference are available and how can they be linked?
• What is the potential of linkage with primary data?
• What must be done to ensure that, in the future, linkage with health care data according to §§ 303 a-f SGB V (DaTraV data) will become possible? What can a possible research data centre on the national level do?

Main areas of work

Based on the project group set up in 2016, the first step was to draw up an inventory of data linkage in Germany, which was finally published in 2018 and which also aims to provide support for future projects. In addition to the (data protection) legal framework, the types of data linkage, their fields of application and approaches to avoid errors were presented using examples. Subsequently, the project group was expanded and worked on a Good Practice Data Linkage, which was finally published in 2019. Both articles have been published in Open Access in the health sector.
In addition, two special issues on methods of secondary data analysis for the journal Das Gesundheitswesen were published in March 2020 in cooperation with the Working Group on Collection and Use of Secondary Data (AGENS) of the German Society for Social Medicine and Prevention (DGSMP) and the German Society for Epidemiology (DGEpi)

Outlook

We are currently working on an English-language version of the Good Practice Data Linking, which will soon be published in an Open Access Journal.. In addition, we are involved in discussions with the BMG about the further development of the Research Data Centre for Health Insurance Data, which is part of the Digital Care Act (DVG). In connection with this, we are working on a publication on the practical design of the Research Data Centre, which ultimately provides for continuous development, in which the possibility of data linkage must also be considered in the long term. In addition, we are involved with the TMF e.V. within the framework of the Medical Informatics Initiative of the BMBF in the design of data access for users of secondary data. We are also currently working for the National Research Network of University Medicine on Covid-19 on a concept for the health insurance data platform.