How can precision medicine for chronic inflammatory diseases become a reality?

More and more people are suffering from chronic inflammatory diseases such as Crohn's disease, psoriasis and rheumatism. They are a serious health problem for those affected and for society as a whole and now account for around half of the healthcare costs in Germany. The members of the Cluster of Excellence "Precision Medicine in Chronic Inflammation" (PMI) are working intensively to significantly improve the early detection, diagnosis and treatment of chronic inflammatory diseases. They want to achieve this by establishing precision medicine in practice. This refers to individualized medicine, which evaluates clinical and molecular data of the individual and precisely tailors the treatments to the disease pattern of an individual person.

In addition to medical challenges, this much more complex and also expensive approach of the desired precision medicine also raises urgent societal, social and economic questions. For example, regarding financial viability, scientific evidence and justice. The research area "RTF IX: Ethics, Epistemology, Communication and Economics" in the Cluster of Excellence PMI deals with these topics. In order to broaden the discourse on this topic, the research area brought together representatives from science, healthcare, health insurance companies, patient organizations and politics for a public symposium in Kiel last week on March 7 and 8.

Around 50 people took part in the event "The underestimated challenge: chronic inflammatory diseases" on site, with others joining via video conference. In lectures and discussion rounds, they dealt with the following questions: Can precision medicine for chronic inflammatory diseases be evidence-based? How can precision medicine be financed for people with chronic inflammation? Can our healthcare system ensure equal access to precision medicine for all chronically ill people? How can patients be involved in the development of precision medicine for chronic inflammatory diseases?

Political scientist Barbara Prainsack, professor at the Department of Political Science, University of Vienna, and chairperson of the European Group on Ethics in Science and New Technologies, gave a keynote lecture on: "Solidarity and precision medicine: a contradiction?" "I do not see the solidarity principle of statutory health insurance threatened by precision medicine. Even back when the solidarity-based healthcare systems were founded, it was clear that some people would incur higher costs. This was consciously accepted, and this also does not change just because patient groups are now split according to molecular criteria," said Prainsack. Financing is ultimately a political issue, not a scientific one. "But other developments that are entangled with precision medicine, such as certain forms of algorithmic decision support, could undermine the solidarity principle," added Prainsack. In order to protect solidarity, one should invest in the human factor and in so-called communicative medicine. "Patients' values and preferences should also be systematically incorporated into the decision-making process," continued Prainsack.

Professor Britta Siegmund, director of the Department of Gastroenterology, Infectious Diseases and Rheumatology at the Charité Berlin and chairperson of the advisory committee of the Deutsche Morbus Crohn/Colitis Ulcerosa Vereinigung e.V. (non-profit association for Crohn's disease/ulcerative colitis), also advocated for this: "Disease control can be perceived differently by patients than by doctors. Doctors and patients must therefore work together to develop the goals of a treatment. The goals of patients are just as important, or even more important, than those of doctors during treatment. We need to adapt the treatment accordingly. And we need to develop tools to routinely incorporate the patient's perspective into the medical consultation."

"I am delighted that we have managed to bring together not only high-profile scientists from various disciplines, but also representatives from the stakeholders involved – such as health insurers, patient organizations and politics – all here at our symposium, and to put the topic up for discussion in a larger public context for the first time," emphasized one of the organizers, Professor Claudia Bozzaro, head of Biomedical Ethics at the Institute of Experimental Medicine (IEM) at the Faculty of Medicine at Kiel University (CAU). "This enables us to gather important impulses for our research in the Cluster of Excellence PMI, and at the same time to establish important networks with key stakeholders," continued Bozzaro.

"As an interdisciplinary Cluster of Excellence, it is important to us to also take into account the ethical, epistemological and economic aspects of precision medicine, to complement our medical and natural sciences focus. This is the only way to make precision medicine for chronic inflammatory diseases a reality," emphasized PMI cluster spokesperson Professor Stefan Schreiber. "These research questions should also continue to shape the agenda of our otherwise medically-oriented Cluster of Excellence, for which we are currently preparing the follow-up application for further funding," continued Schreiber. The application for further funding through the German Excellence Strategy will be submitted at the end of August.

Scientific contacts:

Prof. Cornelius Borck
Head of the Institute for Medical History and Science Research (IMGWF)
University of Lübeck (UzL)
+49 451 3101 3400
cornelius.borck@uni-luebeck.de

Prof. Claudia Bozzaro
Head of Biomedical Ethics, Institute of Experimental Medicine (IEM)
Faculty of Medicine, Kiel University (CAU)
+49 431 500 30331
medizinethik@iem.uni-kiel.de

Dr. Michael Stolpe
Head: Global Health Economy
Kiel Institute for the World Economy (IfW Kiel)
+49 431 8814-246
Michael.Stolpe@ifw-kiel.de