The Initiative of German Practice-Based Research Networks – DESAM-ForNet

From the perspective of patients, clinicians, and other health care professionals wishing to make evidence-based clinical and health policy decisions, the current approach to clinical research has generated too little evidence. This is partly because trial participants are not broadly representative of typical patients, which contributes to substantial uncertainty regarding the risks and benefits of widely used medical interventions. Comparative effectiveness studies would help us know more about the effects of health care delivered ‘in the real world’, but traditional research focuses mainly on innovation, technology and basic biomedical science.

An increasing shortage of general practitioners in Germany highlights the importance of attracting young doctors to general practice and family medicine. Furthermore, the limitations of disease-specific approaches become obvious when multimorbidity and chronic non-infectious diseases dominate the health care agenda. In order to improve the situation, many new departments and general practice research institutes have been established at universities in recent years, and one requirement of the latest medical licensing regulations (ÄApprO) is that general practice and family medicine make up a relevant part of the curriculum. Consequently, almost all university medical faculties have established an academic chair in general practice. The natural environments for research and education in basic and clinical sciences are laboratories and hospital departments. However, research and education in family medicine is rooted in teaching practices and research networks.

Practice-based research networks (PBRNs) are organizations in which practicing clinicians ask and find answers to clinically relevant research questions. PBRNs serve as a bridge connecting the worlds of policy or academia to the “real world” by transferring research ‘from the ivory tower to the village green’ (Chris van Weel). They further provide an important means of supporting collaborative research partnerships between academicians, practices and the communities they serve, thus helping to improve population health, promote research into comparative effectiveness and patient-centered outcomes, and investigate possibilities for health policy reform.

In Germany, research-practice networks used to be set up as part of research projects of limited duration at regional university departments. By combining six regional PBRNs, the German Initiative of Practice-Based Research Networks – DESAM-ForNet will establish a sustainable research infrastructure and realize research potential in general practice, especially in the form of practice-based clinical trials, but also in the shape of large-scale studies in health services and epidemiological research. Our aim is to investigate subjects that really matter to GP practices and the patients GPs care for.

The Initiative has established rules of procedure (German) by which cross-regional cooperation is to be structured.

The central decision-making body for all matters relating to the initiative is the steering committee, in which nine institutions share a total of nine votes:

– The initiative’s practice-based research networks (6 votes).

– The German Foundation of General Practice and Family Medicine (DESAM) on behalf of the coordination office (1 vote)

– The Technology and Methods Platform for Networked Medical Research e.V. (TMF) on behalf of the coordination office (1 vote)

– The German College of General Practitioners and Family Physicians (DEGAM), Research Section (1 vote)

In addition, the Scientific Advisory Board will provide an external perspective on joint endeavours.

The steering committee sets up working groups to prepare its decisions on topics that are relevant to the PBRNs belonging to the Initiative. Overarching aspects, such as quality assurance, research practice training, data protection and IT infrastructure, are discussed in order to reach an agreement on common standards and a sustainable foundation for practice-based research.

Fig.: Governance structure of the Initiative of German Practice-Based Research Networks (DESAM-ForNet)