Background and goals

Diabetes as a public health challenge

Diabetes is a chronic disease with huge public health relevance throughout the world. This particularly applies to type 2 diabetes, which is associated with lifestyles and living conditions. The importance of diabetes is due to the prevalence of type 2 diabetes and its potentially avoidable risk factors. It is often associated with comorbidities and complications, a reduction in health-related quality of life and in healthy and general life expectancy. As such, the condition is also costly to the health system.

Diabetes surveillance at the Robert Koch Institute

Against this background, the Robert Koch Institute (RKI) is conducting a research project to establish a national diabetes surveillance and to extend it to a surveillance of non-communicable diseases (NCD surveillance) in Germany. The project is funded by the Federal Ministry of Health. In the public health context, surveillance refers to the systematic and continous collection and analysis of health-related data. The aim of diabetes surveillance, therefore, is to establish periodic, indicator-based diabetes reporting to provide prompt and action-oriented information on health policy, health research, health care and public health practices by operationalising the links between data garnered from RKI health monitoring and other relevant sources at the federal and regional levels. The findings should serve as a decision-making aid for planning, implementing and evaluating measures aimed at improving diabetes prevention and care. As a model project, the project is intended to create important requirements for establishing surveillance of other public health-relevant NCD, including mental health, as part of an intended comprehensive public health surveillance.

In the first four-year project phase ‘Developing National Diabetes Surveillance at the Robert Koch Institute’, the following milestones were achieved:

1. Develop a conceptual framework and define core indicators to measure risk factors, frequency of diabetes, the consequences of the illness and quality of care
2. Evaluate the available data sources, identify data gaps and assess the integration of secondary data for relevant indicators
3. Coordinate on the content and format of a periodic national diabetes report that takes international best practices into account
4. Draw up a prototype National Diabetes Report
5. Assess how National Diabetes Surveillance can be applied to the surveillance of other chronic diseases

The subsequent two-year project phase ‘Continuation of ongoing project-related funding for diabetes surveillance’ included the following milestones:

1. Establish and further develop an indicator-based time series through the recurring use and supplementation of the data integrated into the first project phase
2. Adapt and complement the indicator set in accordance with changing requirements
3. Strengthen diabetes reporting and ensure that it is geared towards all phases of life and vulnerable target groups
4. Further link the regionalised results from diabetes surveillance to those from health reporting undertaken at the federal state level
5. Ensure that the results are made available in a user-friendly and action-oriented manner

The following one-and-a-half-year project phase ‘Extension of the project Diabetes Surveillance with expansion to an NCD Surveillance’ comprised the following milestones:

1. Update of indicator-based time series and analysis of selected indicators for people with a migration background
2. Inventory of national/international NCD surveillance systems and definition of a core set of indicators for selected additional NCD
3. Pilot evaluations on cause-specific mortality and premature mortality and data linkage of secondary data with data on social and physical environment
4. Update of diabetes surveillance formats
5. Concept development for outcome dissemination of a targeted NCD surveillance

For the current one-and-a-half-year project phase ‘Extension of the project Diabetes Surveillance with expansion to an NCD Surveillance - Continuation", the following milestone are planned:

1. Continuation of diabetes surveillance with expansion to include central indicators of NCD surveillance
2. Piloting of projections on frequencies of selected NCD using diabetes as an example
3. Development of the methodology of a high-frequency surveillance for the process of RKI data collection
4. Further development of the dissemination of results as a basis for a planned ‘Health Information System’

The first three phases of the project were overseen by an interdisciplinary scientific advisory board. For the current project phase, a continued exchange with experts from the advisory board is planned. In order to ensure that milestones set out above are achieved, the project works with other actors from health policy and public health at the federal and state levels, the Federal Centre for Health Education, professional medical associations and national and international scientific cooperation partners from public health. Furthermore, methodological cooperation projects are also provided with targeted support.