Representatives of patient organizations present their participation in research on placebo and nocebo effects for the first time at a SIPS conference. As part of the Collaborative Research Center 289 “Treatment Expectation,” a Patient Advisory Board (PAB), consisting of 16 members, was established in 2024. This board has the task of accompanying and enriching the CRC's research projects from the perspective of those affected.
Prof. Ulrike Bingel, spokesperson for SFB 289 “Treatment Expectation,” welcomes the members of the patient advisory board at the opening event of the SIPS Conference 2025. From left to right: Prof. Ulrike Bingel, Dorothea Fell from the German Rheumatism League, Sonja Arens from the Bundesarbeitsgemeinschaft Selbsthilfe, and Oliver Vorthmann from the German Depression League. On the right is Anna Borgmann from the Medical School Hamburg, psychologist and coordinator of the PAB.
At the 5th SIPS conference in Krakow from June 15th-18th, 2025, Dorothea Fell from the German Rheumatism League, Sonja Arens from the Federal Working Group for Self-Help, and Oliver Vorthmann from the German Depression League explained their wishes and tasks as members of the PAB to researchers at the poster session.
As a member of the board of the Federal Working Group for Self-Help for people with disabilities, chronic illnesses, and their families, Sonja Arens brings the perspective of 119 self-help associations and 13 state working groups to the CRC. “I think this is a wealth of knowledge that can help shape research on treatment expectations in a meaningful way,” she says, explaining her commitment. “In addition, the conference gives me the opportunity to network and gain insights into international placebo research, while at the same time explaining in discussions how important the participatory involvement of patients and the research of this topic is.”
Patient representatives can help ask the right questions
Dorothea Fell from the German Rheumatism League emphasizes, in view of the diverse topics covered at the SIPS conference, "how important it is to ask the right questions when it comes to treatment expectations: How do I formulate a question to get to the heart of the problem in this very complex placebo research? And how can we succeed in understanding the person as a whole?" Oliver Vorthmann from the German Depression League is also enthusiastic because Krakow and the SIPS conference have exceeded his expectations.
At the poster session of SIPS 2025 in Krakow, the patient advisory board of SFB 289 explains its work. From left to right: Oliver Vorthmann from the German Depression League, Prof. Ulrike Bingel from the University of Duisburg-Essen, Sonja Arens from the Bundesarbeitsgemeinschaft Selbsthilfe, Dorothea Fell from the German Rheumatism League, Anna Borgmann from the Medical School Hamburg, and Prof. Winfried Rief from Philipps University Marburg
Prof. Ulrike Bingel, spokesperson for CRC/TRR 289, met the three PAB members at the conference and introduced them to some colleagues. “As crazy as it may sound, even though individual biographies and experiences are central to treatment expectations and individual preferences should definitely be taken into account when specifically optimizing expectations, patients were not involved in the development and interpretation of our research for a long time,” she recalls. This realization motivated the professor at the University of Duisburg-Essen to make the PAB relevant and significant in research and for patients. “The participation of the PAB here in Krakow was a highlight and has gained international visibility. I am proud of that,” explains Prof. Bingel, thanking Prof. Meike Shedden-Mora and Anna Borgmann “for their great work in integrating the PAB into the CRC.”