Dos Anjos Fonseca Adalton, Martufi Valentina, de Araújo Walisson Angélico, Pimenta Denise Moraes, de Lima Acácia Mayra Pereira, de Faria Juliana Araújo Prata, Dias Danilo Luis Cerqueira, Dos Anjos Eduarda Ferreira, Flores Quispe Maria Del Pillar, Piloto Gisela Rodrigues, Lima Vivian Mitiko Queiroz, Ferré Felipe, Sampaio Marcos Antônio Gêmeos Almeida, de Souza Lopes Erika, de Mello Blanda Helena, Daltro Diego Cavalcante Teixeira, de Almeida Mariana Rodrigues Sebastião, Lima Raiza Tourinho, Pinto Junior Elzo Pereira, Barreto Mauricio L, Ichihara Maria Yury T
Centre for Data and Knowledge Integration for Health (CIDACS), Gonçalo Moniz Institute, Oswaldo Cruz Foundation (FIOCRUZ), Salvador, Brazil.
State University of Southwest Bahia (UESB), Salvador, Brazil.
BMC Med Res Methodol. 2025 Apr 4;25(1):88. doi: 10.1186/s12874-025-02530-4.
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.
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.
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.
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.
在健康研究中，利用大数据分析健康方面社会不平等现象的公众参与科学（PES）倡议需要适应全球南方国家背景的策略和方法。本文旨在探讨在巴西——一个在研究和公共政策制定方面有着强大社会参与传统的国家——一个利用行政和现实世界数据的中心开展的两个研究项目如何将包容性和多样性作为关键要素，将知识生产与现实世界的挑战联系起来。
该研究分析了西达斯（Cidacs）的两个研究项目——一个与初级卫生保健（PHC）相关，另一个与数据互操作性相关——在实施过程中如何让公众参与其中。两个项目共同吸引了18名参与者，包括社区代表、卫生专业人员和公共部门管理人员。本文采用案例报告方法，根据预定义的脚本系统记录公众参与科学的经历，涵盖背景、方法、活动、受众和伦理方面。数据通过参与活动期间的参与观察和倾听收集，这促进了参与者与研究人员之间的对话，以及通过后续问卷和随后的讨论收集。本文本身就源于这一合作过程，包括一些公众参与科学的参与者作为共同作者。
参与者的合作影响了研究人员的决策，使他们更深入地了解参与者在日常工作中与每个研究主题相关所面临的挑战。此外，这些讨论促成了新倡议的伙伴关系的建立。参与者强调，除了有机会为科学研究的发展做出贡献外，他们还通过与研究团队的接触获得了新知识。
公众参与科学推动的研究项目中社会群体的多样性和不同观点的纳入有可能促进研究过程和结果的创新，并产生社会影响。科学信息的适用性潜力得到扩展，因为它与现实世界的联系更紧密，而且参与者本身推动了传播过程。
