Patient involvement in agenda setting for respiratory research in the Netherlands: Table 1–

Abstract

To the Editors: Would it be beneficial to actively involve people with a respiratory condition in identifying and setting respiratory research priorities? Research priorities are traditionally set by medical and scientific experts, and it is often argued that this should remain unchanged since it gave rise to the development of high-quality knowledge, medical innovations and the improvement of quality of life [1]. Patients are often considered subjective, knowing little about health research. Furthermore, patient involvement would cost additional time and money [1]. So why would one consider giving patients a voice in setting research priorities? Different arguments are described in a growing body of literature addressing patient participation. First, there are indications that research priorities from experts differ from those of patients [2–4]. To become more responsive to patients’ needs, it would be vital to involve patients in identifying priorities. Patients’ “experiential knowledge”, can complement scientific or medical knowledge [3, 5, 6]. Secondly, the process itself becomes more democratic [2, 5]. Furthermore, patient involvement in decision making can lead to better acceptance of these decisions and outcomes. These arguments have inspired a growing number of funding agencies, including the European Union, to involve patients in research. A pioneer in involving patients research is the Netherlands Asthma Foundation (NAF). To be more democratic, responsive to patients’ needs and to improve societal relevance of their research agenda, NAF involved in 2004, besides scientific and medical experts, people with asthma and/or COPD in setting their research agenda [7, 8]. In a facilitated process, patients articulated needs and prioritised research topics in a well-argued way. Patients did not, as was expected by some experts, just prioritise care research, social research or focus only on their …