Jump to page content

Patient & Stakeholder Engagement is not yet standard practice in Germany, but there have been many positive developments in recent years. There are now some calls for proposals and funding opportunities in Germany that take into account the special requirements of engagement in research. To involve stakeholders already at the application stage, there are occasional calls in which funding for a participatory preliminary phase is possible. This facilitates involvement already in the planning phase of a study.

The following documents provide an overview on the developments in the field of patient and citizen engagement in (health) research in Germany. Please note that most of the following documents are available in German only.   

Recommendations for appropriate funding strategies for participatory health research were published in 2020 and for meta-research on active engagement in health research in 2022 by "PartNet".

The Engagement Strategy Research

In 2023, the Federal Ministry of Education and Research (BMBF) published the Engagement Strategy for Research. This is intended to improve the conditions for engagement in research and research policy. In order to anchor engagement in research, various approaches and measures were formulated that are to be implemented in the coming years. These include the promotion of a network for engagement, the creation of guides and guidelines, and the implementation of incentives for engagement including the implementation of a engagement funding guideline. 

The full document can be downloaded here.

More information on the topic of civic engagement in research has been compiled by the BMBF on this page.

Declaration of the Health Research Forum

2023, the Forum Gesundheitsforschung (Health Research Forum), in which the top representatives of the German research organisations in the field of health research coordinate across organisations, has published a declaration and a collection of good practice examples for the active engagement of patients in health research. The declaration addresses the necessary cultural change for more engagement in research and also the need for structural anchoring. Members of the forum name concrete steps on how they want to expand and promote engagement in health research in the future.

The full document can be downloaded here and a collection of good practice examples on active patient participation can be found here

Further information on the Health Research Forum can be found here.

The White Paper Citizen Science

In 2022, the Citizen Science Strategy 2030 was published to further anchor and promote Citizen Science in Germany. Citizen science in medicine and health research is defined as a field of action in its own right (chapter 11), partly because, compared to interested citizens in other scientific disciplines, patients have a particular motivation to contribute to the research process due to their own involvement, but also because they can contribute specific empirical knowledge. As a vision for 2030, it is formulated: "In 2030, patients will be frequently involved as citizen researchers in all phases of medical and health research." (S. 100)

The White Paper Citizen Science is available in German and English.

The Green Paper on Engagement

In September 2021, the German Federal Ministry of Education and Research (BMBF) published the Green Paper "Engagement in Research". It serves as a starting point for developing concrete recommendations for action to strengthen participatory processes in the field of research - these will be addressed in a white paper in the future. The present Green Paper initially bundles challenges for realising the full potential of engagement in research and research policy and presents initial approaches for action to overcome these challenges for discussion.

The full document can be downloaded here.

#FactoryWissComm

After nine months of collaboration between more than 150 experts, the #FactoryWissComm think tank convened by the BMBF has published recommendations for the further development of science communication and science journalism. The document also includes a chapter on "Science Communication and Engagement" (from p. 51), which describes a paradigm shift from a deficit model with a focus on information transfer in one direction (from science to society) to dialogue and engagement in co-creative processes.
Three basic forms of engagement in science were identified:

1. Engagement in relation to the goals, agenda, or framework of research (e.g., consultations, stakeholder engagement in committees)
2. Engagement as direct involvement in research (e.g., Citizen Science)
3. Engagement in the sense of taking part, experiencing, discussing (e.g. science centers, student laboratories).

The complete document can be downloaded here, a supplementary document to the above mentioned chapter "Science Communication and Participation" with references can be found here.

More information on the initiative can be found on the BMBF website.

The Policy Paper on Science Communication

Science communication can promote the engagement of citizens in research and strengthen the dialog between research and society. In the field of health research, researchers and patients could also work together on generally understandable forms of publication to make study results more accessible to interested groups. The BMBF published its policy paper on science communication in November 2019. It aims to "expand science communication as an integral part of BMBF funding" and promote "new and innovative approaches and formats of knowledge transfer and engagement", especially for research areas with high societal relevance.

The full policy paper can be downloaded here.

The Policy Paper on Engagement

The Federal Ministry of Education and Research (BMBF) published its policy paper on participation back in 2016. Since high-quality citizen engagement can increase the social relevance of research and innovation policy by taking into account the needs formulated by civil society and involving it in the implementation of measures, the use of participatory formats is to be consistently expanded. A differentiated approach is being pursued here, i.e. participatory formats are to be used to varying degrees depending on the topic. These should also not jeopardise scientific freedom. The BMBF identifies engagement in research policy (e.g. setting priorities in research funding), in research (e.g. funding participatory research projects) and in the framework conditions for participation (e.g. setting incentives in the scientific landscape for more participation) as fields of action.

The complete policy paper can be downloaded from this page or obtained directly from the BMBF upon request. The appendix (p. 11) contains a list of quality standards for the planning and implementation of participation processes.

The Health Research Framework Programme

The German government's current framework program for health research, which was published in 2018, is intended to create the basis for greater participation in health research by those affected, relatives and stakeholders in the health care system. In order for research to address people's concerns, a close dialog with citizens is sought. The framework program states:

"Moreover, science only improves people's quality of life in the long term if it takes their realities, wishes and needs into account. Patients, relatives, caregivers, attending physicians or actors who are active in prevention and health promotion should become partners in research. Patients are experts on their health and illness. This starts with the research question: How can I strengthen my health? What can help me live better with my illness? How can I make my everyday life easier? Patients can also provide crucial information to clarify research needs when creating research programs or designing support measures. It is equally important to involve relatives, actors in the living environments, such as educators and teachers, nursing staff, therapeutic specialists as well as general practitioners and specialists, administrative staff from hospitals and health insurance companies in the research. These groups of people also provide valuable impulses from practice that can be taken into account by the researchers. In this way, research results can emerge that find a high level of acceptance in health care practice and are widely applied." (p. 38)

The complete framework program can be downloaded here.