Patient empowerment and patient involvement
Patient empowerment aims to improve the position of patients through information, participation and co-decision-making. Far too often, those affected do not know the reasons behind certain decisions or are unable to understand them. We want to change this by improving health literacy.
Health literacy is the degree to which people are enabled by the educational, social and / or healthcare system through their knowledge, motivation and skills to find, understand, evaluate and apply relevant health information in order to make judgments and decisions in the areas of disease management, disease prevention and health promotion that maintain or improve their quality of life throughout the life course.
Our aim is to entrust patients with a more active role (in the interests of the person affected), especially where the success of treatment depends to a large extent on the actions of the patient. In addition, we would also like to involve family members and relatives in the communication of health literacy and thus empower and encourage them to provide even better support to those affected. We also understand comprehensive patient participation as the inclusion of the relevant perspectives in the planning and implementation of research projects in order to be able to develop improved decision-making principles.
Your contact persons:
Pia Wilkening, Coordinator of Health Services Research
Yvonne Hille, Coordinator of the CCC-N® OncoAcademy Hanover site
E-mail : ccc@mh-hannover.de
This is how we do it
We offer patients and their relatives various events and educational programs. These include, for example, the "Round Table of Self-Help Groups" and our "OnkoHelfer" program.
"Round table of self-help groups"
In the area of self-help work, the "Round table of self-help groups" serves as a forum for exchange between regional and supraregional self-help groups and the CCC Hannover and strengthens joint work. At the meetings, current topics and projects of the CCC Hannover are reported on and suggestions from the self-help groups are collected. You can find information on various self-help groupshere.
OnkoHelfer" program
The OnkoHelfer is a free service for those affected and interested without a medical background to support those affected, their relatives and friends. Further information can be foundhere.
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Patient empowerment in research and clinical trials goes beyond passive participation by actively involving patients in research processes and their design and decision-making. A description of study content and technical terms in layman's terms makes it possible to promote the informed and active participation of those affected.
Online study dashboard
In order to make selected research and specific research questions and results understandable for everyone, the CCC Hannover has created anonline study dashboard Here, interested parties can find selected oncological studies whose background and results are presented in an easily understandable form.
Information on clinical trials for patients can be found here.
The CCC Hannover's Patient Participation Network promotes the topic-related participation of patients and other interested parties and focuses on specific clinical support topics. The network focuses on the diversity of a patient group and is always happy to welcome new interested parties.
The opportunities for participation are very diverse. We take into account your individual wishes regarding areas of involvement, available times, etc. If you would like to participate, you will therefore also receive a questionnaire and data protection regulations from us so that we can take these aspects into account in advance.
The CCC Hannover offers the following opportunities for participation:
- At patient events
- Support with the design of flyers, proofreading, translating, distributing
- Content/organizational preparation and follow-up of events and participation
- For public relations work
- Assisting with photo shoots or videos for the CCC-N
- Assistance with patient reports etc.
- For research projects / studies
- Involvement in the planning and implementation of research projects
- Support in the recruitment of study participants
- Participation in the optimization of questionnaires etc.
- In the preparation of information materials in layman's language
- Proofreading information materials, applications, etc.
- Proofreading of study texts
- For Communications information materials
- Assisting with the creation of information materials
- Participation in workshops etc.
- In the form of visits by oncology patients at Hannover Medical School
- Exchange with oncology inpatients
- Prerequisite: Participation in Module 2 of the OnkoHelfer at the CCC Hannover (details on request)
Contact
Ms. Wilkening
E-mail:ccc@mh-hannover.de
The CCC Hannover has a patient representationinto its organizational structure, which is actively involved in the development of care services, oncological education and the direction of clinical research. This patient representation is a member of the Executive Board of the CCC Hannover, an advisory member of the Extended Board of the CCC Lower Saxony and is involved in advising the CCC Board from a patient perspective as well as in the general representation of patients' interests.
The Patient Advisory Board supports the CCC Hannover in realizing even more patient-centered oncological care and research. The activities of the advisory board cover various areas, from processes and organization to Communications, research topics and study design. The active participation of (former) cancer patients and their families and relatives contributes to the shaping of care and patient-centered research at the MHH through their perspective and experience.