Group Quality and Impact of Participation Processes

Background

Participatory approaches are playing an increasing role in health research. Funding agencies demand and encourage the active engagement of patients and other relevant stakeholders in the research process. However, there are uncertainties and a lack of knowledge on this topic on the part of patients as well the researchers and experts. In Germany, we are - compared to other countries - still at the beginning of the implementation of participatory processes in health research. It would be important that we accompany these critically and constructively and counteract the promotion of "sham participation" with appropriate measures: It must be ensured that patients have a real say in the research process, so that their contribution can also have an impact, in order to make research more relevant and patient-oriented for them.

Focus

In the working group, we want to collect different perspectives and visions on the topic of "Quality and Impact of Participation Processes", e.g. which preconditions must be met for successful patient participation. From this, for example, handouts or checklists could be developed that could be used in participatory research projects, but also in the review of research proposals, to ensure a high quality of participation. Further questions and projects will be developed within the working group.

Organization

We, currently about 15 people from science, research funding and patient representatives, have been meeting once a month (virtually) since spring 2021. We organize our collaboration via the Microsoft Teams platform. Our partner is the Netzwerk Partizipative Gesundheitsforschung. If you are interested, please contact Sarah Weschke.