A topical statement calls for better access and improved linkability as key requirements for much needed progress
The COVID-19 pandemic has made visible the poor health data situation in Germany that affects research activities. Urgent current issues regarding the transmission dynamics of the virus, interaction with other health conditions, or recording and assessment of reactions to vaccines are already being intensively studied and answers are being found in other European countries. In Germany this is only happening with delays, requiring great effort or is even entirely impossible.
Against this backdrop, the Interdisciplinary Commission for Pandemic Research of the Deutsche Forschungsgemeinschaft (DFG, German Research Foundation) has now issued a statement, in which it calls for data for health-related research to be made more accessible and more linkable. The commission points out that research in Germany is not only suffering from a lack of data and methodological prerequisites, but that much needed progress in health-related research is prevented, as access to existing data is often inadequate and that linking such data is associated with significant organisational and legal obstacles.
In its statement, the Commission therefore highlights five fields of action that are interconnected factually and temporally and should be addressed jointly.
Advanced development of a systematic consent concept for legally compliant and trust-based use of data is required as a first step. In addition, electronic patient records should be developed further to feature an opt-out approach for consent to data collection (action field 1). National disease registers or epidemiological registers should be established and expanded to avoid incomplete data analysis and duplicates, detect gaps and harness linkage potential. It must also be ensured that these registers are searchable and can be linked to other data sources (action field 2).
The Commission further suggests that data should be consolidated and that a sustainably funded central data integration body should be established. This body should function as a trust agency that is legally and organisationally able to grant access to data and to link different sets of data (action field 3). Furthermore, it is urgently necessary to create legal certainty for research, by unifying the interpretation of the data protection law in force across national borders. The Commission for Pandemic Research believes that a German research data law could provide for comprehensive legal certainty in this respect (action field 4).
As their final point, the experts also call for a continuous and consistent benchmark for linking different sets of individual personal data. This could be a unique identifier in line with the GDPR that allows for interoperability of different sets of personal data and would form a key element for harmonising and consolidating data records (action field 5).
In its statement, the Commission explains these five action fields and calls for them to be implemented swiftly. Coordinated and integrated progress across all fields of action is vital to allow for the situation to improve fundamentally, according to the Commission for Pandemic Research’s assessment.
Regions: Europe, Germany
Keywords: Covid-19, Covid-19, Health, Policy