ESSTS patient groups: the whole is greater than the sum of its parts
Creators: name: Beljaars, Laura
name: Dunlap, Michele
name: Anderson, Seonaid
Publisher: name: F1000 Research Limited
Year: 2019

description: Background:<br>Since 2008, the European Society for the Study of Tourette Syndrome (ESSTS) has organised annual meetings to coordinate pan-European efforts for the study of Tourette Syndrome (TS). These meetings provide a platform for global outreach and educational activities. As part of the annual meeting representatives of the patients associations from European countries are invited to attend (also known as advocacy groups). Usually the representatives of the patients associations meet for half a day as well as attending the conference and its social events. The goals of the ESSTS association are to understand the prevalence and impact of TS and find effective treatments for TS. It also aims to help stimulate worldwide collaboration in research. ESSTS has fostered the establishment of the European-wide network of TS support and advocacy groups. However, collaboration between advocacy groups and researchers and clinicians can be improved, as well as the collaboration between different advocacy groups. It would be beneficial if the patients advocacy groups could set an agenda and create a mission statement themselves. This would help define the purpose and reason for the group as well as helping it outline what support it can give to member countries and what collaboration it can offer to the researchers and clinicians who attend the ESSTS annual meetings. It has the potential to make collaboration more effective.<br> <br>Methods:<br>The aim was to gather information from different sources to assist in setting an agenda and create a mission statement for the patients associations from European countries.  This involved examining statistics for members of a closed Facebook group called ESSTS Patient Groups. Also under examination was the numbers of previous attendees at the ESSTS advocacy groups showing which countries sent patient representatives. Another source of information was from pre-existing collaboration initiatives between the central ESSTS annual meetings and the ESSTS Patient Groups to help steer future projects.<br> <br>Results and Conclusions:<br>It was found that the ESSTS Patient Facebook group had 62 members representing over 19 countries. There had been some previous collaboration during the ESSTS conference with the patient representatives invited to speak to the main conference on patient perspectives and research collaboration. The 2018 meeting also resulted in the production of two leaflets ‘Guidelines for patient’s participation in research’ and ‘Information on TS related characteristics leaflet for patients’. Since the first ESSTS conference where patient representatives were present, Dresden in 2010, to Copenhagen in 2018, there has been an average of 10 countries in attendance at the ESSTS advocacy groups.<br>The ESSTS Patient Groups would like to put forward the idea that they could be more involved in the conference and have a role to play. This year (2019) the patient’s advocacy groups aim is to set an agenda and create a mission statement. This will outline what support it can give to member countries and what collaboration it can offer to the researchers and clinicians who attend the ESSTS annual meetings.