Priority Medicines for Europe and the World 2013 Update. Background Paper 8 - New Approaches to Promoting Innovation. BP 8.5 - Patient and Citizen Involvement
(2013; 77 pages)

Abstract

This chapter serves as background document for discussion on the involvement of patients and citizens in priority setting for pharmaceutical innovation. At the time of the development of the WHO Priority Medicines for Europe and the World Report in 2004, patient and citizen participation in priority setting was uncommon and knowledge about and experience with the effects of such participation was limited. Currently, involvement of patients and citizens in health research and policy is supported by legal and regulatory requirements. Moreover, there is a substantial body of literature on the topic and much work has been done to realize patient and citizen involvement. This progress indicates that the need for patient and citizen involvement is widely acknowledged by stakeholders in the pharmaceutical innovation process. However, there is a general lack of overview, which hampers further development of best practices for patient and citizen involvement.

The aim of this background paper is to contribute to meaningful patient and citizen involvement in priority setting for pharmaceutical innovation by providing an overview of the current state of knowledge and opinion, and to propose future strategies to improve involvement. We broadened the scope of the paper beyond priority setting for pharmaceutical innovation to the field of health care policy and research. This choice was motivated by the limited literature on patient and citizen involvement specific to the topic of priority setting for pharmaceutical innovation, combined with the rich experience reported in articles about patient and citizen involvement in connected areas (i.e. research design, marketing authorization decisions).

In this background paper, we first describe the approach undertaken to capture the scientific literature on, and the experience with, patient and citizen involvement in health research and policy (Section 2). Next, we briefly discuss the most important drivers for patient and citizen involvement. Subsequently, we look into the question of the difference between "patients" and "citizens" when involvement is desired (Section 4). We then describe "the state of field" with regard to patient and citizen involvement, in four sections: levels of involvement (Section 5), structures for involvement (Section 6), the roles and expertise of patients and citizens (Section 7), evaluating the impact of involvement (Section 8). We finish the paper with a conclusion and suggestions for future research and evaluation (Section 9).

 
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