Patienteninitiierte Forschung in der Onkologie

The perspective of those affected is essential for taking patient-relevant questions into account and identifying gaps in care when selecting the goals of individual research projects. In fact, however, consistent implementation of patient participation is particularly difficult when key aspects of the project, such as the research question, have already been set at the beginning of participation. While patient participation in the development and implementation of research projects in the health care system is now widely accepted, patient-initiated research still seems to be rather rare.

This study takes the form of a narrative review.

Patient participation is not only ethically and socially desirable; research and the researchers themselves also benefit directly. Self-help groups could make a targeted contribution to identifying, collecting, and passing on bottom-up research needs and questions. The Prevention and Integrative Oncology (PRIO) working group, together with the Working Group for Social Work (ASO) and the Conference of Oncology Nursing (KOK), has been able to carry out many small patient-initiated research projects in recent years as part of doctoral projects. The systematic integration of patient-initiated research and a structured search for topics could be a worthwhile goal, even if it would require a lot of resources and could harbor the risk of over-regulation that would no longer allow “ordinary” people to have a chance. In contrast, there is a targeted orientation of questions in real care situations through questions from affected people.