Our Patient Advisory Board

Even during the first funding period of our Collaborative Research Center, it was particularly important to us to take patient perspectives into account. For example, we involved patients during patient days or included them in research projects. With the start of the second funding period, we are once again significantly strengthening patient involvement in our research network.

The Patient Advisory Board of the SFB/TRR 289 “Treatment Expectation” is tasked with supporting and enriching our research projects from the perspective of those affected. Our research aims to improve medical treatments through the targeted use of expectations – and to achieve this, it is absolutely essential to take the patient perspective into account. Our vision is to make our research as relevant, meaningful and impactful as possible for those it affects most.

The Patient Advisory Board consists of representatives from various patient groups and brings together people with diverse perspectives and lived experiences. Some members represent patient organizations, while others contribute their expertise, drawn from personal experiences with different treatments, to our research at the three study sites.

Our researchers meet regularly with the members of the advisory board to discuss current issues related to the research process. Depending on the project phase, we discuss various topics, solicit critical feedback on individual research projects, share experiences and provide updates on the current status of the projects. In addition, individual members have agreed to provide guidance on specific projects throughout all phases, from the initial research idea to the interpretation of results. Feedback from the advisory board will also be incorporated into our future research projects.

Patient involvement in our research benefits everyone involved: Patients can influence what is researched and how, and researchers can ensure the relevance of their work. This process also guarantees that our research and its findings are communicated in a way that is understandable to patients.

What role does the new Patient Advisory Board play in our research?

Our research consortium “Treatment Expectation” aims to make good medicine even better by specifically taking expectation effects into account. This is intended to benefit patients above all. This can only work if we incorporate their perspective into our research from the very beginning. In accordance with the principle “Nothing about us without us”, experts by experience should be involved in all phases of research, from formulating the research question to utilizing and communicating the results.

Is this something special?

In Germany, direct patient involvement in research is still in its infancy. Many researchers are increasingly recognizing its great importance and potential in research. Our project is therefore pioneering in our field of research and helps make medical research more meaningful and effective.

What do you hope to achieve through the work of the Patient Advisory Board?

Our Patient Advisory Board brings together a wide variety of perspectives and experiences. This is important because our research topic – treatment expectations – is fundamentally relevant to every type of treatment.

For one thing, we have been able to recruit representatives from major patient organizations, such as the German Pain League and the German Depression League, to serve on our advisory board. On the other hand, our members contribute their personal experiences with medical or psychotherapeutic treatments to our research. This provides us researchers with valuable insight into which topics are of great importance from the perspective of those affected.

If you have any questions or would like to contact the Patient Advisory Board, please contact:

Anna Borgmann
M.Sc., Research Associate, Focus on Research
anna.borgmann@medicalschool-hamburg.de
040 - 361 226 49310

Prof. Dr. Meike Shedden Mora
Professor of Clinical Psychology and Psychotherapy
meike.shedden-mora@medicalschool-hamburg.de
040 - 361 226 49309

MSH Medical School Hamburg
Am Kaiserkai 1, 20457 Hamburg
www.medicalschool-hamburg.de