How can patients truly participate in research-projects. Recommendations based on an evaluation study.

Patient participation is seen as an pivotal way to improve quality of care, for instance by involving patients already in the research phase. In order to truly participate, patients should be equal partners in the process of knowledge co-construction. In an evaluation study at the Erasmus Cancer Institute, patients are collaborating directly with researchers at both the level of a specific research-project and the agenda-setting of the research group. This extends the involvement of patients from primarily influencing decisions concerning health care research (such as setting the research agenda by/for patient organizations, collaborating with patient-representatives in writing research grant proposals and incorporating the patient perspective in funding decisions) to directly influencing the research itself. Continuous monitoring and evaluation by the Athena Institute of this involvement provides insight in the facilitating and impeding factors regarding patient involvement, interactions between researchers and patients, the learning experiences taking place for all involved stakeholders, and what is needed to scale up the initiative within and outside the organization.