Patient Participation In Agenda Setting On Lung Research: Methodology And Added Value

Rationale: The role of patients with chronic lung diseases in lung research is often restricted to being study objects. However, we think that active involvement of patients in research is beneficial. In 2004 we developed an extensive method to involve patients in research policy and decision making. Patients, researchers and physicians jointly established a research agenda according to this method based on scientific state-of-the-art and patient experiences. However, we lacked a model to update and extend the research agenda based on patient experiences. Aim: To develop a brief method to update and extend the research agenda based on active patient participation. Methods: The current update and extension method includes different steps. First we developed the method. Thereafter we tested the model involving the following steps. We interviewed pulmonary scientists and physicians (n=7), and held a plenary discussion with scientists and physicians (n=20). This resulted in a research agenda according to scientists and physicians. Thirdly, we organised focus group discussions with patients with chronic lung diseases (n=31). Data from the focus group discussions were validated and prioritised using a web-based questionnaire among patients with chronic lung diseases (n=165). Subsequently the questionnaire data were analysed. The resulting data from both scientists/physicians and patients were grouped and merged into two different lists: a research agenda for asthma and COPD and a research agenda for rare lung diseases. Finally, these lists were send to all groups for a complete check and a final check on attainability to scientists and physicians. Results: The development and testing of update method was done in 5 month. All groups were actively involved. Patients were satisfied with this methodology and able to provide their perspectives. The testing showed that this method resulted in two different workable research agendas. Within each agenda the overlap between research themes given by scientists, physicians and patients was substantial with respect to basic, translational and applied research. The overlap between both agendas was also considerable. Differences were noted with respect to e.g. co-morbidities (patients) and smoking interventions (physicians and scientists), as well as disease specific research themes. Conclusion: The current model for updating and extending research priorities proved useful for eliciting research priorities from scientists, physicians and patients. Involving patient experiences identified and exemplified research areas in chronic lung diseases that were previously not the research focus in The Netherlands .