Patients as partners in a health research agenda setting: the feasibility of a participatory methodology

Abstract

This article deals with the participation of patients in setting the agenda of health research that potentially directly affects their lives. The focus is on the communication problems encountered between lay people and medical professionals in developing a joint research agenda. The author argues that a participatory methodology can address these problems and thereby give patients "a say" in the types of health research that have the greatest chance of affecting them personally. The article uses a case example of people with spinal cord injuries participating in research to support the importance and value of patient participation. The case example also helps to rethink appropriate methodologies or at least to modify existing approaches by paying more attention to required social conditions, diversity, and the life world of patients to foster meaningful participation.