Helping patients cope with their disease and shared decision making
In 1979 the Dutch Cancer Society started a Cancer Information Service to help patients in coping with their disease and in shared decision making. Brochures, an email service and a toll free cancer helpline are part of this service. Besides medical information special attention is paid to psychosocial issues like fatigue, sexuality and rehabilitation. Over time our services have changed in accordance with the emancipation of the patient, less taboo on cancer and technological progress in communication. Nowadays the preferred channel for patient information is the web.
One of our key issues is the provision of digital and customized information for patients, their relatives and friends. June 2013 we launched a digital platform named kanker.nl. This platform combines hitherto separate streams of information from various parties in the field of oncology, and it enables new services to be offered. In this regard, the wishes of the e-patient are paramount. In taking this approach, we are catering to a fundamental change in the way modern patients and their families deal with the information and services pertaining to their illness. The role of the internet, the changing perception of the doctor-patient relationship and the relations within the healthcare system are increasingly turning patients into ‘care consumers’. Our ambition is to build a reliable, secure and rich internet environment where cancer patients can obtain any and all information about cancer. Here, they will be able to get in touch with fellow patients, discuss their experiences, contact health professionals, and find information on patient interest. The DCS has transferred all her patient information to this new platform. In due time the web based clinical database will be included too. Patients will receive customized information about appropriate trials in the Netherlands based on their online profile. Together with our partners, the Dutch Federation of Cancer Patient Organizations and the Dutch Comprehensive Cancer Centre we aim at kanker.nl being the preferred website for cancer patients in the Netherlands.
Research has revealed that psychosocial care for cancer patients in the Netherlands is currently substandard. Cancer patients and their families are ill- informed about what care is available and where they can get it. The quality of the care needs further development too. The Dutch Cancer Society believes it to be of the utmost importance that all patients and their families have access to a top-quality range of psychosocial care. Extra investments are made in projects and programs to enhance the accessibility and quality of psychosocial care. DCS collaborates with key partners in psychosocial research and care, like the Dutch Society for Psycho-Oncology and the Federation of Psychosocial Support Centers.
Patient support groups
For many years the DCS supports cancer patient organizations and their Federation since we believe that they can be of great help to fellow patients. Together they advocate for the accessibility and high standard quality of care as well.