To identify the studies in this report we searched the Pub Med, Embase and Cochrane databases using a range and combination of the following keywords: Patient involvement, participation, advocacy, organisation, association, recruitment, subject, advisor, co-researcher, clinical trial, research, study, user involvement, participation , participatory research, lay involvement, citizen involvement, delegated power, informed consent. These keywords were also run against paediatric research, Biobanking and ethical decision making.
Reports published online but not in the official scientific databases were also included in this overview whenever necessary for obtaining a sufficient amount of information on certain subjects.The search led to a finding of numerous interesting studies and articles, however due to the specific definitions that are involved when describing patient involvement in clinical trials, we were only able to identify a small number of studies that had described the involvement if patients and/or patient organisations in clinical trials as something other than just as subjects in the clinical trial. The overview we present here is not exclusive to all forms or stories about patient involvement that might be out in the world. We present this overview as a starting point from which the PatientPartner will set out to identify the needs of Patients Partnering in the clinical research context.This report consists of an overview of the literature with links to the summary of the referred articles.