Sustainable patient participation in research; an intervention study at Erasmus MC Cancer Institute

Background: Patient involvement in research (PI) can provide complementary views on research priorities, as patients possess experiential knowledge about their disease. In order to sustainably embed PI, knowledge on potential facilitators and barriers is needed. In a case study at the Erasmus MC Cancer Institute, these factors were reflexively explored and applied by involving patients in setting the agenda of the sarcoma research group. Methods: We adopted the participatory research approach Reflexive Monitoring in Action to facilitate a system innovation towards PI. Using Transition Theory as the theoretical framework, cultural, structural and practical factors facilitating or impeding (the embedding of) PI were analyzed. The niche-initiative was evaluated by 15 in-depth interviews with those involved, and systematic observations during (reflexive) meetings. Sustainable embedding of PI was further propagated and evaluated by linking with policy staff. Preliminary results: PI in the sarcoma research group has rooted. Patients formulated research needs, stakeholders jointly selected a relevant question and developed a research proposal. On the niche level this concrete result aided in a cultural transition of valuing PI. However, on the structural and practical level the flexibility to adapt conventional procedures to suit PI is limited and PI activities are regarded supplementary rather than routine. Scaling up of PI to the regime level is facilitated by external conditions (health funds requiring PI in grant allocations); however, a dedicated staff member is pivotal. Conclusions: PI is cherished at the niche-level; a concrete result (a patient-driven research proposal) can inspire change agents and needs to be accompanied by a structural and practical transition. Dissemination of quick wins and stakeholders’ experiences is recommended. Scaling up of PI to the regime-level is a complex process requiring attention to the cultural, structural and practical domain. Main messages 1. A concrete result of patient involvement in research inspires change agents at the niche-level 2. Sustainable involvement of patients in research requires a regime-level transition in the cultural, structural and practical domain