Conclusion
205 of a total of 12000 national patient organisations took part in PatientPartner’s survey on patient involvement in clinical trials. Although not representative for all patient organisations in Europe this is the only survey to date that has made an inventory on the experiences of patient organisations in being involved in (the development of) clinical trials and research. As there was, until date, not much information on how patient organisations are actively involved in clinical trials and research we have decided that the title of this survey should be the identification of good practices rather than best practices. This survey set out to make a zero measurement of patient organisations involvement as of today, so that in the future the effect of possible policy changes and recommendations that hopefully will come from the project can be compared to the current situation. The survey thus set out to identify good practices of active patient involvement throughout Europe. What is needed for a good practice to become a best practice, has not been determined in this survey. However this topic will discussed in more detail during the regional and final workshops of the PatientPartner project in which all stakeholders in the clinical trial context will engage in a dialogue to determine how to achieve partnerships in the clinical trials and research studies of the future.
As patient organisations throughout Europe are known to be specialised in the providing of information to and about their members, it was no surprise that half of all our respondents have experience in providing information in the context of clinical trials and research.
This survey has shown that patient organisations are active on all levels of the clinical trial development process, with 25% of all respondents already involved on either of the remaining 5 levels of patient involvement ,79% of all respondents being involved in more than one level of the clinical trial development process and 24% of all respondents being involved on all levels.
In comparison; when looking at the involvement of patient organisations in Biobanking and medical databanks and clinical trials with children involvement seems to be scarce. When taking a more closer look at the survey it showed that the little involvement of patient organisations that there is in these field of clinical trials is primarily through the experience of patient organisations that represent the “rare” conditions.
Overall descriptions of the involvement of patient organisations were many and diverse with over 30 clinical trials and studies named and more studies described by the respondents in more detail. The survey did not identify however how successful coalitions between patient organisations and clinical researchers have/had been only that they had or have existed. More insight is needed into how these “good practices” can attribute to recommendations on how successful partnerships can be formed and made effective for all stakeholders. To do so PatientPartner will recontact a number of patient organisations that described their good practice in the survey for an in-depth semi-structured interview into their experiences.
As the PatientPartner project wants to identify regional differences the survey compared the involvement of patient organisations from the North-Western, Southern and Central-Eastern Europe. Overall the differences between regions were small. Central and Eastern European patient organisations tended to be less frequently involved as a research subject and a driving force while patient organisations from North-Western Europe were less involved as a co-researcher. Patient organisations from Southern Europe tended to be either equally involved or more involved, in the case of having experience in the providing of information, as a co-researcher or acting as the driving force of a clinical trial. Given these results we conclude that although there are levels in which some regions tend to be less or more involved, there is involvement of patient organisation on all levels of the clinical trial development process, in all European regions, leaving room for improvement throughout Europe in the near future.