|
PatientPartner Project
|
 |
| Identifying the needs for Patients Partnering in Clinical Research |
PatientPartner is a 3-year EU FP7 (Seventh Framework Programme) project investigating, enforcing and advising on the role of patient organisations in clinical trials.
Project Description
The aim of this project is to identify the patients’ needs for partnership in the clinical trials’ context. Moreover, this project will 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, forms the basis of the PatientPartner project. This inventory consists 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 form the basis of a subsequent workshop series. These workshops are the opportunity for a dialogue between patient organisations, pharmaceutical companies and researchers on patient involvement in the clinical trial context. As a result of this dialogue, PatientPartner will form recommendations as to how patient organisations can proceed to become more equal partners in clinical trials and clinical research.
Start-Up Central Workshop: 11 June 2009.
Details /
Report
North-Western European Workshop: 12 and 13 October 2009.
Details /
Report
Central-Eastern European Workshop: 30 November and 1 December 2009.
Details /
Report
Southern European Workshop: 24 and 25 March 2010.
Details /
Report
Final Central Workshop: 7 and 8 December 2010.
Details /
Report
As a means towards patient partnerships with the stakeholders, this project will give 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 is called the European Network of Patients Partnering in Clinical Research (ENPCR) . Its aim is to empower patient organisations for their role as partner in clinical trials as well as ultimately creating a one stop shop for other stakeholders to get in touch with European patient organisations for advice on or participation in clinical research.
The results of the project will be widely disseminated during the last year of the project. To facilitate this dissemination, a patient information guide and a guide for researchers will be created to help them give rise to more effective partnerships in clinical trials and clinical research. In addition, recommendations that are made by the joined stakeholders during the workshops will be brought to the attention of policy makers and the broader public via the media, conferences, etc.
Coordinator:
Mr. Cor OOSTERWIJK, VSOP
Contact:
Ms. Kim WEVER
Tel.: +31-356034040, Fax: +31-356037440, Email: info@patientpartner-europe.eu
www.patientpartner-europe.eu
Participants
Dutch Genetic Alliance (VSOP), Coordinator
European Forum for Good Clinical Practice (EFGCP)
European Genetic Alliances’ Network (EGAN)
Genetic Alliance UK (Genetic Alliance UK)
|
