An active role for patients in clinical research?

Abstract In the context of stricter control of clinical research, more informed patients, and a growing number of patient organizations, an active role for patients in clinical research has more than one meaning. Patient involvement in research as subjects is insufficient and can be improved by the information provided by patient groups and by better collaboration between the research community and patient groups. Knowledge about and understanding of clinical trials is central to greater participation. Involvement in the research process provides another role for patients and patient groups and a number of studies have examined such involvement. Patient advocacy groups are involved in training initiatives to enable effective patient involvement in the administration and conduct of clinical research. Various national and European research and regulatory organizations now work with patient representatives, often providing training for them. A third role for patient organizations lies in supporting the research community in lobbying for increased funding, especially for independent clinical research. The area of clinical research outside randomized clinical trials needs also to be carefully considered, in particular the Outcomes Research field. Drug Dev. Res. 67:188–192, 2006. © 2006 Wiley‐Liss, Inc.