Subproject 2 (P2) - Patient Participation

Project lead

Prof Dr. phil. Dipl.-Soz. Ruth Deck, Institut für Sozialmedizin und Epidemiologie (ISE), UKSH


Project description

In order to better align the care of patients with their needs, OUTLIVE-CRC takes the perspective of patients into account in all research topics. Particularly important are the experiences of those affected with the disease and their previous care, as well as their wishes and ideas for improvement within the research project.

To ensure this, OUTLIVE-CRC has set up a separate subproject within the research network that is concerned with patient participation.

The first step is to find patients who are interested and have the time to participate in OUTLIVE-CRC as patient representatives and patient advisors. After a complete explanation of their tasks and the intended cooperation, they are to accompany OUTLIVE-CRC over the next three years and actively participate in shaping it. The specific interest in individual topics and the individually possible amount of time will be taken into account.

In the second step, the collaboration with the researchers and the different project contents will be organized. These are assigned to specific work packages, and the respective opinions and suggestions of the patient representatives are reported back to the project partners.

Regular reports on the status of the projects and the work of the patient representatives are submitted to a patient advisory board.

Patient representatives and the patient advisory board do not participate in the study themselves and can therefore objectively evaluate the individual steps. Nevertheless, they bring a subjective perspective to the project, as people affected by cancer who should also benefit from the research. They thus complement the know-how of the researchers in a valuable way.

Participating reseachers