[Participation in primary care research - From the idea to the constitution of a citizens advisory board]. / Partizipation in der allgemeinmedizinischen Forschung ­ Von der Idee bis zur Gründung eines Bürger*innenbeirats.

ABSTRACT

INTRODUCTION: Public participation in research processes is becoming increasingly important and is justified with positive effects for research. The first successful initiatives can also be found in general practice and health services research. The transparent presentation of these projects is essential to the discussion about participation. The aim of this article is to present and discuss the conception and implementation of the initiative at the Institute of General Practice and Health Services Research at the Technical University of Munich and the kick-off event for the participation of patients, citizens and patient representatives. METHODS: This article reports the planning, recruitment, implementation, and evaluation of the kick-off event. Frameworks for future events are described. RESULTS: In total, twelve persons were recruited through various recruitment channels to participate in the kick-off event. The participants showed a diverse structure of motives with regard to participation in research. All participants shared the essential goal of improving research and care by adding their perspectives to research processes. However, the specific opportunities for participation and the role of patients and citizens in research processes were unclear. During the event, future workshops were planned to address these challenges. The focus was on strengthening relationships and communicating the basics of primary care research in order to enable sustainable participation. DISCUSSION: The participants' different motivations resulted in the need to explore the concrete possibilities of participation. One of the specific requirements was to focus on role identification and the structure of the initiative. The question of self-description and -identification as a patient and/or citizen seemed crucial. Furthermore, a concise introduction to the topic of participation in research processes, as well as patient and citizen qualifications, is considered necessary. CONCLUSION: Establishing an advisory board for patients and citizens in primary care research is associated with specific requirements. In addition to fundamental necessities such as the joint clarification of the possibilities of participation, defining the role and establishing the identity of the initiative should be promoted.