Belong: “What We Wanted was What We Needed” – A Model of Inclusive Community Advocacy: The Sitges Meetings

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EATG is publishing “What We Wanted was What We Needed” – A Model of Inclusive Community Advocacy: The Sitges Meetings. This case study was conducted within the framework of the Belong project, advocating for the inclusion of people living with HIV in non-HIV clinical trials, and documents experiences, results, and lessons learned from the Sitges meetings.


The Sitges Meetings were a series of community-owned multi-stakeholder meetings, held between 2007 and 2017 in Sitges, Spain. The purpose was to promote the inclusion of people with HIV/hepatitis C coinfection in clinical trials for emerging hepatitis treatments, and rapid access to new, safe and effective treatments.


The Sitges meetings employed a collaborative approach to find concrete solutions, involving community representatives and activists from the HIV and hepatitis field, regulators, physicians, researchers and the pharmaceutical industry. Emphasising the urgency to find effective treatments supported by clinical trial data, the Sitges meetings raised awareness about HIV/HCV comorbidity. This led to changes in exclusion criteria for clinical trials and revisions to EMA guidelines. These meetings set the ground for building meaningful connections between stakeholders, particularly within the HIV and hepatitis communities, as well as between the community, pharmaceutical companies and physicians.


As part of the Belong project, EATG wanted to reflect on community needs, draw lessons from effective community advocacy influencing policies and clinical trials, and foster discussions that encourage all people with a health conditions to assert their right to participate in clinical research, potentially benefiting their treatment and care.


EATG intends to replicate and apply the Sitges Meetings Model specifically to the development of guidelines for the inclusion of people living with HIV in non-HIV clinical trials.


In considering the application of the Sitges Model to other disease areas, this case study underscores the importance of identifying the right community leaders and having all available scientific information to hand. The facilitation of meetings must seek a co-creation of solutions, with all people contributing to reach an agreement. The Sitges meetings demonstrated the power of combining two groups of patients/advocates working alongside other key stakeholders towards a shared vision and to achieve stated goals.


Download the case study here or access it through the materials widget


With Inclusion, We #Belong



The Belong project has been developed by the EATG, and was made possible through a grant from ViiV Healthcare Europe Ltd.

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