EATG presents on community engagement in R&D at BioIntegraSaude 2024 conference

On April 9, Rocco Pignata and Fiona Greenhalgh, EATG Programme Officers and Project Coordinators, were invited to BioIntegraSaúde 2024, a Galician conference co-organised by Instituto de Investigación Sanitaria Galicia Sur (IISGS), Instituto de Investigación Biomédica de A Coruña (INIBIC) and Instituto de Investigacións sanitarias de Santiago (IDIS). The event was held at Álvaro Cunqueiro Hospital in Vigo.

Rocco and Fiona were invited to present and discuss how they coordinate patient and community engagement in EATG’s projects, focusing specifically on their experience with the RBDCOV and Belong Projects, and to share resources that could support investigators in conducting more inclusive and representative patient engagement.

The presentation at the event was preceded by an interview with the local newspaper, FARO DE VIGO. The full interview is available in Spanish here. Below, you will find the interview, translated into English.

Interview by Ana Blasco Rodríguez and photography by Alba Villar, FARO DE VIGO.

“Often those who are going to use the medicine are not well involved in its development”.

ROCCO PIGNATA and FIONA GREENHALGH, EATG Programme Officers and Project Coordinators, participated yesterday in BioIntegra Saúde 2024, organised by the Galicia Sur Health Research Institute.

The Galicia Sur Health Research Institute hosted yesterday Biointegra Saúde 2024, the annual meeting with its counterparts in Santiago (IDIS) and A Coruña (Inibic) to share their scientific activity and establish synergies. The inaugural conference was given by Rocco Pignata and Fiona Greenhalgh, Programme Officers and Project Coordinators of the European AIDS Treatment Group (EATG). In an interview before the talk, the representatives of this NGO – which works internationally from Brussels – explained that their aim is to share the organisation’s perspective on patient engagement in the different stages of research, as well as the tools and resources they have developed for this purpose, with the idea that they may be useful for other associations or researchers.

–What will you address during the inaugural conference?

– Our objective is to offer a perspective on how patient engagement could be done. Patient engagement means the meaningful participation of the community of people living with a health condition in the whole process of research and development, especially biomedical research and development. Very often, the people who are eventually going to use the treatments are not well involved in the development process and their needs are missing. What we do with many of our projects is to make sure that the community perspective is included in all stages of biomedical research. And we also try to build trusting relationships with researchers, so that it is not just a doctor-patient relationship, but a relationship of trust between peers, within a more inclusive and representative process.

-And did you find it difficult to get them to accept patient participation in the research process?

-Our organisation has been doing this since 1992. An important part of our work is the interaction with the pharmaceutical companies, and at the beginning, in the 1990s, with the early stages of HIV treatment development, it was very, very political. A strong activism. It was a way of transforming that relationship and making it a bit more productive. Now the relationship is improving, especially in European projects. Although, from time to time, community partnerships may be perceived as a tick on a checklist. What we do is to ensure that this does not happen, that the perspective of people living with a health condition is indeed an important part of all the work we do together. It has been difficult, yes, and it still can be, but things are improving and I am optimistic about the future.

– And what do you recommend to other associations?

– What we hope to do here is to share practices, examples of how we do it and inform them that these practices can be a resource for other health areas as well. An example is setting up Community Advisory Panels, where community members give their perspective. We hope to inspire and get people to start a discussion. In the end, it is all about starting the discussion. A lot of times I see that researchers do not know where to start and though there are resources, sometimes they can be a bit hidden.

-Who can a Community Advisory Panel give their perspective to?

-To all parties involved in the research process: patient organisations, pharmaceutical companies, researchers, regulatory agencies…. Because there are so many different parties involved and each has different needs…. For example, for clinical trial protocols, our advisory panel gives suggestions on how to make the trials more accessible so that the people who are actually going to participate in the trials know what the investigators are talking about. Very technical terminology is often used and this can be changed. If the stakeholders, whether it is the pharmaceutical company or the researchers, know that there are people who have an experience of living with that health condition and can contribute something and do it in a meaningful way, that is a good starting point. The most important thing, in the end, is that all stakeholders are included. Often, what makes the difference is sitting at the same table, listening to what people are experiencing and making those realities part of the development process.