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Project Description

The aim of this project was to identify the patients’ needs for partnership in the clinical trials context. Moreover, the project lead to a well-organised and sustainable communication platform and guidelines, to enable the mutual beneficial interactions between patients and clinical trial professionals. 

The inventory of the existing views, needs, practices and experiences of patients, formed the basis of the PatientPartner project. This inventory consisted of 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.  The results of this inventory formed the basis of the subsequent workshop series.

These workshops were the venue for dialogue between patient organisations, pharmaceutical companies and researchers, on patient involvement in the clinical trials’ context. As a result of this dialogue, PatientPartner formed recommendations as to how patient organisations can proceed to become more equal partners in clinical trials and clinical research. As a means towards patient partnerships with the stakeholders, the project gave rise to a facilitating structure that empowers, enables and mobilises European patient organisations to interact with the other European and international stakeholders in clinical trials.

This virtual network called the European Network of Patients Partnering in Clinical Research (ENPCR) aimed to empower patient organisations in their role as partners in clinical trials and was a one shop stop for other stakeholders to get in touch with European patient organisations for advice on, or participation in, clinical research.  The results of the project were widely disseminated during the last year of the project. A patient information guide and a guide for sponsors and researchers were also developed to help give rise to more effective partnerships in clinical trials and clinical research. In addition, recommendations that were made by the joined stakeholders during the workshops were collated in a document circulated to policy makers (and the broader public via the media, conferences etc.)

Below you can download all of the resources generated by the PatientPartner Project.


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