Patient Involvement in Clinical Research: A guide for Patient Organisations and Patient Representatives

TitlePatient Involvement in Clinical Research: A guide for Patient Organisations and Patient Representatives
Publication TypeReport
Year of Publication2011
Corporate AuthorsPatientPartner,
Pagination40 p.
Date Published04/2011
CitySoest (NL)
KeywordsClinical Trials as Topic; Patient Participation
AbstractWho wrote this guide? This guide was produced by PatientPartner, a three year project funded by 7th Framework programme of the European Commission. The PatientPartner project aims to identify patient needs for partnership in the clinical trial process. The project firstly examined the existing views,needs, practices and experiences of patients. This involved literature reviews, interviews with Patient Organisations, opinion leaders and other clinical trial stakeholders as well as a European survey on patient involvement in clinical trials to identify good practices. PatientPartner also conducted a series of workshops to promote the dialogue between Patient Organisations, pharmaceutical companies and researchers on patient involvement in the clinical trials’ context. Who is this guide for? This guide has been created for Patient Organisations and patient representatives. It provides them with information and tools necessary to open communication between themselves and other stakeholders involved in clinical research, by providing information on the clinical trial process. If you are a sponsor or investigator, please refer to our other guide: “Patient Involvement in Clinical Research: A guide for Sponsors and Investigators” which can be downloaded from our website: What is in this guide? This guide contains information on ways in which Patient Organisations and patient representatives can develop better and more open communication with other stakeholders involved in clinical research. The suggestions that are made have been derived from background reading, surveys, interviews and workshops organised and conducted by PatientPartner. All of the background information used in this guide can be accessed from the PatientPartner website: