Public engagement with science: an inclusive approach to innovate in health research with real-world data.

Abstract

Background: Public engagement with science (PES) initiatives in health research that use big data to analyze social inequalities in health requires strategies and methods adapted to the contexts of countries in the Global South. This paper aims to examine how, in Brazil - a country with a strong tradition of social participation in research and public policymaking-two research projects from a center that utilizes administrative and real-world data incorporate inclusion and diversity as key elements to connect knowledge production with real-world challenges.

Methods: The study analyzes how two Cidacs research projects - one related to Primary Health Care (PHC) and the other to Data Interoperability-involved members of the public throughout their implementation. Both projects jointly engaged 18 participants, including community representatives, health professionals, and public sector managers. A case report approach is being employed in this paper to systematically document PES experiences based on a predefined script, covering context, methodology, activities, audiences, and ethical aspects. Data were collected through participant observation and listening during engagement activities, which facilitated dialogue between participants and researchers, as well as through follow-up questionnaires and subsequent discussions. This paper itself emerged from this collaborative process, including with some PES participants as co-authors.

Results: The participants' collaboration impacted the researchers' decisions, providing a closer understanding of the challenges faced by the participants in their daily work in relation to each of the research themes. Furthermore, these discussions resulted in the establishment of partnerships for new initiatives. The participants highlighted that, in addition to the opportunity to contribute to the development of scientific research, they acquired new knowledge from their contact with the research teams.

Conclusions: The diversity of social groups and the inclusion of different perspectives in research projects mobilized by PES have the potential to promote innovations in research processes and results, as well as have social impact. The potential for applicability of scientific information is expanded since it is more connected to the real world, and the participants themselves drive the dissemination process.