Medical research projects and clinical trials aim to help people affected by certain diseases. But disease sufferers are usually not involved in the planning of such research. Dr. Sarah Weschke, a project officer at the BIH QUEST Center, explains why this is so: “Unfortunately, resources are often lacking for research projects that involve patients. This led us to establish the BIH QUEST Grant for Patient & Stakeholder Engagement, which aims to fill this gap by supporting in particular active patient engagement during the planning of studies.” The first public call for proposals was launched in March 2021. Out of the eleven project applications submitted by researchers at the BIH and Charité – Universitätsmedizin Berlin, four projects were chosen for funding by an external selection panel comprised of national and international experts.
Projects ranged from sexual dysfunction to healthy aging in the city
“Both the applications and the funded projects came from a wide spectrum of medical disciplines,” reports Weschke, who oversaw the grant application process. “They reflect the diverse medical research being conducted at the BIH and Charité. And there is obviously a great need to involve patients from the very beginning.”
The funded projects address patient engagement in university teaching, in a study of how stress influences female sexual function, in a research program on healthy aging in the city, and in the digital transformation of medicine in the context of rare diseases. Here are more details about the projects:
- “Nothing about us without us: Establishing a patient think tank with #dedoc° at Charité,” led by Dr. Katarina Braune of the Department of Pediatric Endocrinology and Diabetology at Charité, gave patients a voice on equal footing not only in research, but also in university teaching at Charité. The aim is to change perspectives. Braune now plans to obtain further funding, so as to put the newly founded patient think tank on a long-term sustainable footing.
- “FEMstress translational study – What impact does chronic stress have on the sexual function of women,” led by Dr. Laura Hatzler of the Institute of Sexology and Sexual Medicine at Charité, set out to develop a study protocol for further research into sexual dysfunction in women.Scientists and affected individuals worked together to create a protocol.
- “Developing a participatory research program for healthy aging in the city,” led by Prof. Wolfram Herrmann of the Institute of General Practice and Family Medicine, focused on identifying relevant research questions through discussions with older people living in Berlin. The results will be used to plan research projects that are significant for an older urban population.
- The project “PAFORSE: Patient-driven research for rare diseases,” led by Dr. Josef Schepers of the Core Unit eHealth & Interoperability at the BIH at Charité, worked together with the Alliance for Chronic Rare Diseases (Allianz Chronisch Seltener Erkrankungen, ACHSE e.V.) to identify the needs of patients and their advocacy groups with regard to disease-specific registries and other issues related to digitalization. The results will be used for the follow-up application of the Collaboration on Rare Diseases, Use Case of the Medical Informatics Initiative (CORD-MI).
The projects were successfully completed in December 2021, and the grantees are now using the results to plan follow-up funding for the jointly developed studies and ideas. Prof. Ulrich Dirnagl, head of the BIH QUEST Center, is pleased with the success of the QUEST PSE Grant: “The active engagement of patients has enabled the realization of projects that incorporate the needs of the actual target group from the very beginning. We’ve already received inquiries from researchers interested in participating in the next call.”