Introduction
Since the start of the PatientPartner project in May 2008, the PatientPartner task force has been busy making an inventory of the needs of patient organisations partnering in the clinical trial context. Following a review of the current available literature, it was clear that information on how patient organisations are currently involved in clinical trials is scarce.
The PatientPartner taskforce therefore decided to perform a zero measurement of patient organisation’s involvement in clinical trials as a starting point to identify good practices. Between October and December of 2008, PatientPartner conducted a survey throughout Europe on the active involvement of patient organisations in clinical trials.
In the survey and within the PatientPartner project we define patient involvement in clinical trials as active, on-going involvement of patients or patient representatives with researchers and/or members of pharmaceutical companies and/or other stakeholders in clinical trials and research. We have chosen to use the term patient involvement instead of the frequently used term patient participation to avoid confusion with the common definition of patient participation in a clinical trial which solely means taking part in a trial as a research subject.