The Patient Research Council NCT WERA

Advisor, source of ideas, and sparring partner

The Patient Research Council (PatFoR) NCT WERA was founded in 2022. It currently consists of ten members who have been affected by illness, either personally or through a family member or friend. PatFoR WERA can therefore address a variety of entities in the study consultation, including breast cancer, multiple myeloma, cervical cancer, testicular cancer, childhood cancer, and leukemia.

PatFoR WERA is a collaboration between the four locations of Würzburg, Erlangen, Regensburg, and Augsburg. Regular online meetings and in-person meetings at patient retreats in Heidelberg, the national conference “Patients as Partners in Cancer Research", and WERA network meetings ensure close and trusting cooperation.

To be able to speak as patient experts on an equal footing with researchers, members participate in practical training courses, such as those offered online by the Patient Expert Academy.

The main areas of activity are:

Advising NCT scientists on the development of clinical trials from the patient’s perspective.
Involvement in all research phases, from the initial question to the final discussion of the results.
Representing the patient perspective in decision-making bodies, working groups, and at events.
Promoting cooperation with self-help organizations, physicians, scientists, and institutions at the NCT WERA site.

Dr. Wolfgang Schäfer

Spokesperson of the Patient Research Council NCT WERA

As both a patient representative and an oncology patient, I can offer a unique perspective on research and study design that researchers cannot always provide. My goal is to work in partnership.

Involving patient representatives promotes communication with researchers and physicians using patient-oriented language. This collaboration may also encourage other patients to participate in studies.

Professor Dr. Thomas Bein

Deputy Spokesperson of the Patient Research Council NCT WERA

In recent years, the doctor-patient relationship has undergone a fundamental change. Patients are no longer passive recipients of treatment, but rather responsible and active partners who, based on comprehensive information and their own values and attitudes, co-determine the type and extent of therapy.

From my experience, I know such a step is only possible through extensive communication between physicians and patients. Involving patients in research projects and clinical issues introduces a patient-oriented perspective that can be implemented accordingly.

Elvira Bierdel-Willkommen

Supporting patients and advancing cancer research are matters close to my heart. Patient involvement in cancer research is essential because patients’ perspectives help make research practical and patient-oriented.

As a former cancer patient and an active member of self-help organizations, including “mamazone – Frauen und Forschung gegen Brustkrebs e.V.”, I would like to contribute my experiences, as well as those of many other patients, to the Patient Research Council NCT WERA. I wish to help ensure that research projects take into account the actual needs of those affected, and that new approaches are scientifically meaningful and helpful in everyday life.

Tobias Hofer

I am involved with the Patient Research Council NCT WERA to give a voice to those affected by the disease, ensuring their needs, experiences, and perspectives are considered.

For me, patient involvement in cancer research is important because it allows me to influence the following aspects: Better relevance of research, individual hope and influence, improved quality of results, better communication, and, last but not least, strengthened self-confidence.

Susanne Kagermeier

I am involved to ensure that the perspectives of those affected and their relatives are incorporated into studies, allowing researchers to focus more on actual needs. It is also important to me that all affected individuals have access to studies, even if they live in rural areas.

Jana Lorenz-Eck

As a member of the Patient Research Council, I would like to represent the interests of sick children and adolescents, and give them a voice. This age group especially needs more research and consideration of their unique concerns.

Professor Dr. Marianne Patt

When patients are actively involved in designing clinical studies, the research questions and study designs are more likely to be practical and geared toward patients’ actual needs. Patients can provide valuable insights on relevant endpoints, side effects, and quality of life issues that are often overlooked in traditional research. Their participation makes studies more ethical, relevant, and effective because they reflect the real challenges and priorities of those affected.

Dr. Angelika Schedel

My motivation stems from my firm belief that true patient participation is not only a right, but is essential for developing groundbreaking therapies and making sustainable decisions in the healthcare system. I am passionate about ensuring that patients’ perspectives and needs are considered an integral part of every step in the process.

Biggi Welter

As a long-term survivor, I believe that research is crucial. I am convinced that I might not be alive today without it. I am grateful that we patients can participate in the Patient Research Council NCT WERA because our questions and motives are often completely different to those of researchers.

As a board member of “mamazone – Frauen und Forschung gegen Brustkrebs e.V.”, I would also like to convince other patients that studies are important. Even if they can’t help us today, they can help future generations.

My greatest motivation is ensuring that my children and others are spared fear, suffering, and pain.

Sandra Windschüttl

Patient participation is of central importance in cancer research to ensure that scientific approaches are practice-oriented and patient-centered. As a patient representative on the Patient Research Council NCT WERA, I am particularly invested in specifying the formulation of relevant questions and promoting the implementation of research results in clinical practice.

I firmly believe that by working closely together, we can improve the care and quality of life for cancer patients in a sustainable, forward-thinking way.