Patient Advisory Board

The claim "patient-centeredness" has gained acceptance in society. Although in politics and medicine there is awareness and willingness for this, it is  additionally our task to sensitize affected persons and to bring it to life. To do this, we should make every effort. From my experience with a skin cancer self-help group, I know that a serious, life-threatening illness cannot only reveal weaknesses but also strengths. Accordingly, times of crisis should be used for considering how scarce resources in research and healthcare can be innovatively used for the purpose of providing patient-oriented medical care that is comprehensible in its claim, sustainable in its effects, and people-oriented in its practical implementation.

I hope that our Patient Advisory Board  will contribute to realizing this understanding jointly with all stakeholders at the interface between scientific research and medical care.

  
The cancer diagnosis caught me unawares even twice: the first time as a relative and the second time I was personally affected. Therefore, I know from my own experience some moments of helplessness that arise with regard to diagnosis, treatment, and quality of life.

For this reason, I am involved in the Patient Advisory Board of the Charité Comprehensive Cancer Center: I want to support those people affected to find answers, and to defining a way for themselves to deal with this new life situation

For several years, I have been involved in the Charité Comprehensive Cancer Center as a patient representative and have contributed, for example, to the organization of the Berlin Cancer Self-Help Day and meetings with cancer self-help initiatives.

An entity-spanning exchange is as important to me as a low-threshold opportunity for cancer patients to have access to good information and competent support. Furthermore, I am convinced that our new Patient Advisory Board will contribute to achieve significant improvements in clinical research and cancer-patient care in Berlin and its surrounding areas.

I am looking forward to the new opportunities that arise with regard to the development towards the National Center for Tumor Diseases.

As a patient advocate in the self-help association for laryngetomees, I advise patients and their families before and after partial resection and total laryngectomy (removal of the larynx) in hospitals as well as at home.

Based on my own experience since my first diagnosis in April 2009 and recurrence in November 2010, it is my special concern to contribute with my knowledge and expertise to the Patient Advisory Board.

As a tumor patient, you are often overwhelmed with diagnoses and different treatment methods. You are uncertain whom to turn to with questions, concerns, and other issues - apart from the treating physicians. I would be happy to spend my time and attention, to listen, and to offer advice, support, and guidance. I understand myself as a connecting link between you as a patient and the treating doctors respectively. The importance of self-help is still underestimated.

Therefore, my motto is: ONLY TOGETHER WE ARE STRONG!

Derived from the goals of the Women's Cancer Self-Help Group "Support-Inform-Accompany", I want to  promote better patient information about the respective disease and its treatment, as well as the rights and responsibilities of patients. Furthermore, I aim to make self-help work more visible to the public. It is also my concern to use my role as a member of the Patient Advisory Board to mediate between patients and doctors.

As a person affected by an incurable disease, I understand the fears and worries of these patients very well. With empathy and commitment, I am happy to serve as a connecting link between them.

In 2000, I was diagnosed with breast cancer and have been involved in breast cancer organizations ever since. My particular interest lies in cancer research. That is one of the reasons  why I co-founded the patient-owned biobank for breast cancer, "Stiftung PATH - Patients' Tumorbank of Hope", and have been its chairwoman for a long time. We support cancer research with biomaterials and data donated by breast-cancer patients.

I know that well-informed patient representatives can also be partners in research. The perspective of people affected should be included in future research. In the Patient Advisory Board of the CCCC, I would like to contribute to making patients research partners.

As chairwoman of Leben nach Krebs! e.V., I am particularly concerned about medical and psychosocial aftercare of cancer patients. Here, I also see the need as well at CCCC as at the future NCT to provide and to publish relevant information in an understandable way, which should be conveyed either in personal conversations or via video messages.