In March 2019, a workshop was organised to validate the final draft of the “Recommendations on the required capabilities by all stakeholders to implement patient engagement” before launching the wider consultation and to perform a trial consultation. The group of 37 participants also sought to agree on concrete plans in the areas identified as gaps where the material for facilitating patients engagement is needed.
It was agreed that the recommendations document achieved its overarching goal, but before launching it for wider consultation, breakout sessions took place to further refine the content.
It was also decided to present the recommendations in three different formats, including online interactive, offline and also as PowerPoint presentation.
In the forthcoming months, the work will focus on the development of materials for facilitating patient engagement looking at three specific areas: conflict of interest, Community Advisory Boards (CABs), and the EUPATI industry Guidance.
The group concluded that producing guidance for patient organisations and companies for raising awareness on restrictions that apply to patients working with industry would be essential in increasing the understanding of conflict of interest. Case studies from different stakeholders would also be of significant value. The development of tools for organising CABs in different disease areas and tools to help in facilitating the process was also suggested. Finally, it was decided to pursue complementing the EUPATI Industry Guidance, by providing more granular information for specific sections in appendices where appropriate.