Evaluating patient participation during the programming and implementation phases of participatory research agenda setting

English Summary Various scholars argue that active involvement of patients in research agenda setting will improve not only the legitimacy of research, but will also lead to more needs-oriented research, since the topics on the agenda reflect the problems patients experience. Over the past six years, the number of initiatives for patient participation in research agenda setting has quickly grown. To operationalize this form of patient participation the ‘Dialogue Model’ has been developed in The Netherlands. Dialogue, besides consultation, seems a fruitful way for patient participation, because it does not offend (scientific) experts and includes the perspectives of all parties. The Dialogue Model comprises six phases: (1) Initiation and preparation, (2) Consultation, (3) Prioritization, (4) Integration, (5) Programming, and (6) Implementation. Since 2003, different research funding agencies and patient organizations have used this Dialogue Model to involve patients in agenda setting on health research. Phases 1-4 were executed by the Athena Institute (VU University) and/or Caphri (University Maastricht) and have been evaluated previously. Phases 5 and 6 were the responsibility mainly of the research funding agencies. However, little structured insights are available on experiences with, and achievements and pitfalls of, patient participation during the subsequent phases of programming and implementation. There is also hardly any insight in how the inputs that patients provided during phases 1-4 were used in phases 5 and 6. The overall aim of this project is therefore to thoroughly analyze the experiences, achievements and pitfalls of patient participation during the phases of programming and implementation of participatory agenda-setting initiatives in order to develop strategies/instruments to make patient participation in research agenda setting more effective. The relevance of this study is two-fold. Firstly it will contribute to the body of scientific knowledge on patient participation in research agenda setting. Secondly this study is of societal relevance. It will contribute to the development of strategies/instrument for patient participation in research agenda setting, which will be widely applicable for different patient groups, funding organisations and research groups. Two conceptual frameworks inform this study; one directly related to patient participation in research agenda setting, and another one concerning change processes in societal systems. In this evaluation study, at least 8 different experimental settings (‘proeftuinen’) are studied. The research approach is based on the methodology of responsive evaluation. The evaluation study comprises 4 phases: (1) Exploration, (2) Consultation, (3) Validation and action planning, and (4) Integration and implementation. Total duration of the project is 10 months. In phase 1 of the evaluation study, a literature and document analysis and about 8 interviews take place to get an overview of the scientific state-of-the art, to identify whether additional participatory agenda-setting initiatives have taken place in The Netherlands and to get a rough overview of the experimental settings included in the study. Phase 2 uses 25 to 50 in-depth interviews to gain a better understanding of the impact of the agenda setting processes and in what way and to what extent patient participation took place in phases 5 and 6. Phase 3 validates the results from phases 1 and 2, using 3 homogeneous focus groups with patients, .researchers and research funding agencies. Recommendations are also formulated. During the last phase, results are integrated and implementation of the research results commences by organizing an invitational conference on joint agenda setting, various publications in scientific journals and brochures for different stakeholder groups, as well as several presentations for different audiences. A critical reflection group is established consisting of 7 or 8 experts, including patients, scientists, and staff members of research funding agencies and patient organizations.