On May 28th, 29th and 30th, the Living Lab for Health at IrsiCaixa together with our project coordination team Roger Paredes, facilitated a series of workshops that brought together people living with HIV (PLWH) on one side, and professionals on the other, to explore their perceptions on the barriers, needs, facilitators and expectations of being part of a potential clinical trial combining an HIV vaccine with faecal microbiota transplantation (FMT).
The initiative follows the principles of Responsible Research and Innovation (RRI), which promotes participatory, open, inclusive and responsive research processes involving multiple stakeholders. A total of 22 people participated, including PLWH from both the Catalonia region (8) and international communities (5), as well as healthcare providers and researchers involved in HIV and FMT research who participate in the MISTRAL project (9).
Each workshop consisted of two main exercises designed to facilitate discussions that lead to mutual learning, co-creation and critical thinking. During the first exercise, participants worked in small groups to reflect on the barriers, needs, and facilitators of the potential trial combining FMT with an HIV vaccine. They explored different aspects of the clinical trial such as the participatory process for the design of the protocol and information to be given to the participants and for steering the other phases of the research process, preferences regarding the donor and the nomenclature of the FMT technique.
The second exercise explored three main topics: how acceptable they perceived that participants would be willing to join such a trial, how urgent they perceived the research is, and what they expected from it. Participants shared their thoughts using a rating scale and then took part in a group discussion where they explained and discussed their different perspectives.
The insights gathered during these workshops are currently being analysed by the Living Lab for Health team. The results will contribute to shaping the research agenda, ensuring that the voices of those most affected and also of a wide diversity of professionals are central to the decision-making of research processes that will take place in the future, after the end of MISTRAL.
