Background:The perspective of patients has historically not been heard in both clinical research and care.Currently, just few scientific institutions provide sustainable mechanisms for patient involvement in research projects.Nevertheless, patient involvement has gained importance and is now advocated not solely by patient representatives and researchers, but also demanded by funders.To meet these requirements and to strengthen active patient involvement the Patient Advisory Board (PAB) of the Study Center of the German Society of Surgery (SDGC) was founded at Heidelberg University Hospital in 2021. Materials and methods:The PAB comprises 16 members including patients undergoing major surgery, their relatives, and representatives of patient support groups, such as ILCO, and AdP.The PAB has developed and adopted its own bylaws and meets regularly.PAB activities include prioritizing research topics, advising on grant applications, generating trial documents and publications in lay terms, and involvement in study design and study-related committees. Results:As of September 2023, the PAB has conducted a total of 17 meetings and advised 20 study ideas from researchers nationwide for funding applications.6 PAB representatives have been integrated into trial committees, contributing actively to the conduct of these trials.Besides, 2 own BMBF-funded projects were initiated in cooperation with the PAB: a systematic review examining the current status of patient involvement in surgical trials and a conceptional phase aimed at designing a multicenter RCT on prehabilitation in colorectal cancer patients. Conclusion:Institutions like the PAB play a pivotal role in advancing patient involvement, enabling researchers to actively incorporate patient experience.The PAB is one of the first patient advisory boards in Germany.Its high level of activity and advocacy by patients, researchers and funders demonstrates the need for such institutions within the German research landscape.In addition to the general work of the PAB, first results of the conceptual phase of the PREHAB trial will be presented at the congress.
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Holze et al. (2024) studied this question.
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