Patient Participation

Patient data: Valuable raw material for future research

The digitalization of our healthcare system and health research is generating ever greater volumes of data. This enables researchers and physicians to determine more quickly, for example, whether a drug is safe or whether there are risk factors for certain diseases. In short, the digitization of health data is revolutionizing health research and our healthcare system (keyword: "data-rich medicine"). This health data is a valuable raw material for digital medicine of the future.

In order to use this treasure efficiently for the benefit of patients, data must be exchanged across the boundaries of institutions and disciplines, harmonized and networked via secure infrastructures. Health data must be handled with great sensitivity; data protection and data security are therefore of paramount importance. For this very reason, the values, interests and needs of patients should also be decisively reflected in data-driven medical research. With this in mind, in addition to twelve DZG scientists, six patient representatives also participate in the Patient Participation Working Group.

The tasks of the working group are:

  • To develop models and instruments for better patient participation in data-rich research
  • To create awareness for patient participation
  • Initiate a communication campaign on the topics of "data-rich medicine" and "data donation"
  • Identify patient values, interests and needs and
  • To promote networking and cooperation on all issues of patient participation between the German Centers for Health Research and its partners
Members of the working group
  • Wiebke Lesch (DZHK), Management and coordination
  • Dr. Katharina Eulenburg (DZHK)
  • Prof. Dr. Andreas Fritsche (DZD)
  • Dr. Philipp Gebhardt (DKTK)
  • Dr. Astrid Glaser (DZD)
  • Dr. Julia Hoffmann (DZHK)
  • Ulrike Koller (DZL)
  • Monika Kraus (DZHK)
  • Melanie Stecher (DZIF)
  • Prof. Dr. Martina Roes (DZNE)
  • Prof. Dr. Anja Schneider (DZNE)
  • Katharina Schuh (DKTK)
  • Prof. Dr. Jörg Janne Vehreschild (DZIF)
  • Dr. Anke Witting (DZNE)
  • Luise Wolf (DZIF)
  • Dr. Annegret Zurawski (DZL)
Patient representatives:
  • Karen Abel (DZL)
  • Dr. Dietrich Bollmann (DZL)
  • Christine Dehn (DZHK)
  • Johannes Förner (DKTK)
  • Dr. Karin Neumann (DZHK)
  • Helga Rohra (DZNE)
  • Karin Seyffarth (DZD)