Stakeholders’ perspectives on patient involvement in systematic reviews – Results of a World Café in Germany

Introduction

Patient involvement (PI) in systematic reviews (SRs) can help to improve the quality of SRs and enhance the credibility of the research process. At the same time, PI in SRs poses challenges such as the need for extra time. While several organizations and working groups from English-speaking countries provide recommendations for PI in SRs, there is a lack of current insights from stakeholders in Germany, including researchers and patients. Eliciting their perspectives is indicated, as PI in SRs in Germany might differ due to language barriers and organizational dissimilarities. For sharing and discussing stakeholders’ experiences in Germany, a workshop was facilitated. This paper summarizes the results of the workshop to elucidate stakeholders’ perspectives on key aspects of PI in SRs in Germany.

Methods

A World Café was conducted at the 2023 conference of the Network for Evidence-based Medicine. Participants at all levels of experience could take part without prior registration. The data obtained was summarized narratively in an iterative process, and a framework of the topics discussed was developed.

Results

22 participants, predominantly researchers, took part. Participants formulated several general conditions for PI in SRs such as time and transparency. The majority of the tasks described referred to the application phase and the initial phase of a SR. The development of training and information materials in plain German language was deemed essential. The application phase of an externally funded SR and patient recruitment were considered as particularly challenging.

Discussion

Several of the formulated aspects such as time and transparency are consistent with earlier work. The project start of a SR, however, has so far not been explicitly described in the literature as being of particular importance. This phase might be even more crucial to SR projects in Germany since researchers are expected to develop information materials for patients. Both the application phase and patient recruitment could be considered particularly challenging due to a lower degree of organisation of PI in Germany.

Conclusion

World Café participants described many aspects referring to the project start of a SR. This underlines that PI in SRs needs to be described as a process. A process model intertwining the phases of a SR with the respective phases of PI, ideally including best practices for each phase, could be of great value. With respect to the specific context in Germany, a greater degree of organization of PI, i. e. coordinated by an institution, could help to manage challenges such as patient recruitment.