Year of Grant: 2016

Location: Switzerland

No one knows how to deal and live with a cancer diagnosis better than cancer patients themselves and their relatives. Active integration of affected cancer patients and involvment of patient organizations are desperately needed to help improve patient relevance, quality and effectiveness of clinical research. However, as compared to other countries, respect and inclusion of patients’ interests in Switzerland is still considerably low today, although it gained some minor traction in recent years. 

As it stands, the involvement of patients in cancer research is still in its early stages of development in Switzerland. Though many small individual support groups and patient advocacy organizations exist, they are not interconnected and do not act as a unified assembly. The Swiss Group for Clinical Cancer Research (SAKK) currently maintains informal contact with these organizations and supports collaborative efforts, depending on common needs.

Under the auspices of the SAKK umbrella, a consortium of seven individuals consisting of patients, families, caregivers and their representatives will be established. The aims of the consortium are:

1. Improve readability of informed consent by better informing on risks and benefits;

2. Advise the SAKK Board on research questions and strategic decisions from the patient’s point of view;

3. Get members of the consortium to act as ambassadors and advocate for clinical cancer research, bringing in more patients to participate in the studies; and

4. Fit study designs aligned with patients’ needs.

This group will also assume responsibilities, including collaborations with disease-specific working groups and recruitment of patients to the SAKK Board.