It Starts and Ends with Us: Community at the Centre of Clinical Studies

We call on researchers, policymakers, sponsors and public health leaders to champion meaningful community engagement at every step of clinical research. This includes recognising lived experience as expertise, supporting inclusive practices in research, and valuing people as partners in innovation.

This campaign by the European AIDS Treatment Group (EATG) sheds light on the essential role that communities play in shaping stronger, more ethical and effective health research. It focuses on the experiences of the Community Advisory Panel (CAP) within the RBDCOV project, an initiative supported by EU Horizon 2020 to develop a new COVID-19 vaccine.

Too often, research is designed without input from the very people it affects. This campaign challenges that approach by sharing the voices and insights of community members who were involved from the start of the study design. Through personal interviews, written reflections, and open conversations, we highlight how community knowledge can improve both the quality and the impact of scientific research.

This is a campaign about shifting mindsets. Research is not something done to communities. It must be done with them. Because real progress in public health starts and ends with the people it serves.

People who live with and are affected by health conditions bring vital experience and insight to the table. Their knowledge helps make clinical trials more accessible, more trusted, and more effective. In the RBDCOV project, this principle guided the work of the Community Advisory Panel.

CAP members played an active role in shaping the study. They helped review clinical trial protocols, suggested improvements to participant materials, ensured the use of clear and inclusive language, and contributed to outreach strategies. Their input helped make the study more relevant to real people and more ethical in its approach. The CAP also supported the psychosocial research component, which explored the emotional and social experiences of participants.

To share these perspectives, we produced six video interviews with CAP members and two blog articles. Together, these eight stories offer a wide-ranging view of what it means to be part of an inclusive research project.

The topics we touch upon in this campaign include youth participation in vaccine trials, the importance of representation in study design, trust and vaccine hesitancy, and the history of patient activism in public health.

All interviews are available on EATG’s YouTube channel and are subtitled in English, Spanish, and Catalan.

At the heart of this campaign are the real voices of community advocates who are helping reshape the future of clinical research.

EATG is leading WP9 of the RBDCOV project, which focuses on Community Engagement. In this context, establishing a Community Advisory Panel (CAP) was a key priority from the outset of the project. The CAP, consisted of EATG members and expert representatives from other disease area communities, drove various elements of the projects, and the outcomes of their work are summarised at the RBDCOV Community Engagement Toolbox.

This campaign provides the space to showcase these achievements and the importance of meaningfully engaging the community in clinical research from start to end.

EATG’s communication team focused on creating a setting of co-creation, where CAP members led the aims, focus, direction, and key messaging of the campaign. Starting from a cooperative concept note that was discussed over online meetings, we agreed that the final face-to-face CAP meeting would be the right place to shoot the storytelling videos. During this meeting in Barcelona, we filmed six powerful interviews who. Each story offers a unique window into what meaningful community involvement looks like in practice, from influencing trial design to breaking down barriers in vaccine access.

To ensure every voice was included, two CAP members who couldn’t attend in person shared their insights through written blogs. Their reflections dive deep into issues like youth participation in clinical trials and how we can make research more inclusive and representative.

These interviews and blogs are not just updates; they are stories that move, inform, and inspire. We invite you to explore them, listen closely, and hear directly from the people who are pushing for more ethical and inclusive science.

All videos are available on EATG’s YouTube channel with subtitles in English, Spanish, and Catalan. Whether you are a researcher, policymaker, healthcare worker, or community member, these stories are for you.

We hope you will join us, share these stories, and carry their messages forward.