Research

A good life with precision medicine

Potentials and limitations of precision medicine from the perspective of researchers, health care professionals and patients with chronic inflammatory diseases.

Background

Precision medicine research and its clinical application brings promise of optimized therapies and thereby improved quality of life for patients with chronic inflammatory diseases, such as psoriasis, Morbus Crohn or ulcerative colitis. This new medical paradigm, however, also raises a variety of questions concerning its potentials and limitations. On the one hand, precision medicine is tied to gread hopes in view of improved prevention, more targeted therapies, and fewer side effects. On the other hand, though, doubts have been raised about a one-sided focus on measurable data rather than on the person of the patient and their own concept of a "good life".

the research project investigates how experts and patients perceive these and other possibilities and limitations in precision medicine and further, what meanings precision medicine has for the experience and conception of a good life from the patient and expert viewpoints.

Research objectives

A particular focus is developing new patient-reported outcomes for precision medicine, especially through examining what patients and also experts think makes living with the disease better. How does what patients see as being important relate to the evaluation criteria used by the researchers and treating physicians?Additionally, the project should make a contribution to the discussion of ethical issues in precision medicine by analyzing questions of communication and clinical decision making, A further important goal is using project results to enrich the philosophy of having a good life whilst living under the conditions of a chronic disease.

Research methods

  1. Literature reviews of
  • ethics and precision medicine
  • expectations, attitudes, values and concerns of patients and experts regarding precision medicine
  • Quality of life for those with chronic inflammatory diseases (psoriasis, M. Crohn, ulcerative colitis)
  • patient reported-outcomes for those with chronic inflammatory diseases
  • the philosophy of having a good life under the conditions of a chronic disease
     
  1. Qualitative interviews with experts
  • on the expectations, attitudes, values and concerns experts have regarding precision medicine
     
  1. Qualitative interviews/focus groups with patients on 
  • their ideas about a good life in the influence of disease and therapies on quality of life
  • perceptions of therapy-related decisions
  • their expectations, attitudes, values and concerns regarding precision medicine
  • communication between caregivers and patients
     
  1. Theoretical development of
  • improvement to the existing and creation of new patient-reported outcomes for patients with psoriasis, Morbus Crohn and ulcerative colitis
  • the philosophy of a good life under the conditions of a chronic disease
     

Funding

German Research Foundation within the framework of the cluster of excellence "Precision Medicine in Chronic Inflammation" 2020-2025.

Team

  • Prof. Dr. Claudia Bozzaro, (beginning 01st of October 2020) Institute for Experimental Medicine, Biomedical Ethics Working Group, Kiel University (CAU), Germany
  • Prof. Dr. Christoph Rehmann-Sutter, Institute for Medicine History and Science Research, University of Lübeck, Germany
  • Dr. Anke Erdmann, Institute for Experimental Medicine, Biomedical Ethics Working Group, Kiel University (CAU), Germany

 

Link to PMI-Cluster