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Concluding remarks


There seems to be an increasing recognition of the need for an infrastructure, including formal recruitment procedures, training and mentoring, to support an agenda of involvement in clinical trials and research, and a need to challenge the ethos of traditional clinical research which does not easily lend itself to this agenda (42). The tone in most articles on the topic of patient involvement in clinical research is a critical but positive one, with some good practices and methods for partnership already being described in the “official” literature. However this literature is not extensive nor does the literature that is available describe all initiatives of patient involvement in clinical research that have been established throughout Europe. To obtain a better picture of the actual level of active patient involvement of patients and patient organisations in clinical trials and research, PatientPartner will conduct a European wide survey on the active involvement of patient organisations throughout Europe. This survey hopes to identify good practices which then can serve as a template for the development of further partnerships in the clinical trials context. Overall we conclude that there is a movement towards the involvement of patients, parents, carers and patient organisations in clinical research, but further work needs to be done to explore the concepts of partnership between all stakeholders in clinical trials. 


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