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In Brazil, where there is a history of social participation in research and public policymaking, a research center that uses administrative, real-world data to produce relevant scientific evidence for collective and individual decision-making incorporates inclusion and diversity as key elements to connect knowledge production with the real world. Methods The experiences of two research projects are described based on a contextualization of the initiatives and subsequent description of the methodological procedures adopted for both interventions, including the definition of target audiences, activities, and ethical aspects, among others. Both projects are centered around the study of Primary Health Care and Data Interoperability and engage participants from public management, health workers, researchers, and civil society representatives. Results The participants' collaboration impacted on the researchers' decisions, which began to have a closer understanding of the challenges faced by the participants in their daily work in relation to each of the research themes. This 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. Figures Figure 1 Figure 2 1. Context Publications related to public engagement in science (PES) in health research increased intensively: around 79% (54 to 215 articles) between 2013 and 2023 on the PubMed platform; a 30% increase on Scielo, in publications on public and community engagement and social participation between 2020 and 2023. The initiatives range from actions in which participants influence health decisions [1,2] , suggesting improvements in health services [3] or participating in research that applies participatory methodologies, as in Rubio et al. [4] However, this volume is much lower when it comes to PES for health research that explores Big Data. Only 47 such records were found between 2015 and 2024. PES refers to one of the levels of participation of different social segments in the process of constructing scientific knowledge [5] . Initially developed in countries of the Global North, it is better known in Brazil as social and community participation, deeply linked to the struggle for human rights in alignment with social movements. A good example of this has been the creation and development of the Brazilian Unified Health System (SUS) in 1988, which aimed to reduce health inequities in the country by guaranteeing universal, comprehensive, and free access to health services for all [6,7] . Some of the actors that participated in the social struggles for the establishment of the SUS, from both academia and public management, founded the Center for Data and Knowledge Integration for Health (Cidacs/Fiocruz Bahia) in 2016. The research center was created with the aim of carrying out multidisciplinary studies that use the linking of large administrative databases to generate evidence on the social determinants of health and to assess the impact of public policies on the health of the population, using Real-World Data (RWD) [8] . This article presents a methodological approach to PES based on strategies to enable inclusion and diversity in health research carried out with RWD. Using two experiences of Cidacs research projects related to Primary Health Care (Cidacs PHC) and data interoperability (Cidacs-PHDC), we will present the challenges and solutions developed, seeking to contribute to the systematization of a strategy in research processes that promote inclusion and diversity in knowledge production. We will also demonstrate the impacts and lessons learned from these initiatives. 2. Methods The cases presented involve two research projects carried out at Cidacs that included different audiences – community representatives, health professionals, and health management technicians – from the onset of the research process. It is important to highlight that the production of this article itself is one of the results of this inclusive cooperation strategy, since some participants are also coauthors of this work. To ensure that the manuscript reflected the perspectives of those involved in PES activities, all participants were invited to contribute. The invitation was sent via an email containing five open-ended questions, with the option to respond via an attached document or an online form. In total, 18 people were invited, of whom 7 agreed to participate, submitting contributions reflecting their views on the activities undertaken. To present the initiatives of interest, we adopted the case report – a form of knowledge production based on critical reflection from an academic or professional experience. Based on a script [9] we systematized the inclusive experiences of PES based on their contextualization, the methodological procedures adopted for each intervention, and the characterization of the research projects, in terms of time, space, activities, audiences, ethical aspects, among others. 2.1. A model of public engagement with science for health research At CIDACS, PES focuses on sharing experiences and knowledge between researchers and stakeholders of the health system to generate evidence that supports public policies. The work is done in collaboration with managers and members of social groups directly involved in the topics studied, especially those related to social determinants of health. The involvement of these audiences is carefully planned and implemented progressively, considering their specific demands and needs. These activities include consulting, interpreting, validating information and co-creating knowledge dissemination products. The groups invited to participate in these initiatives are identified according to the study objects of each project, and range from representatives of specific groups – e.g. traditional populations, favela residents –, to public managers, policymakers and intergovernmental organizations – such as the World Health Organization (WHO) and the United Nations (UN) –, to advocacy groups and civil entities, health workers, media and education professionals, as well as students. Within the scope of this work, the Cidacs team develops a series of tasks, ranging from research to evaluation, according to the workflow below (Figure 1). Since the conception of each research project, researchers have indicated the intention of carrying out PES. After mapping relevant stakeholders, a series of specific actions are developed throughout the project to promote dialogue with them. This entire journey involves a step-by-step process that begins with building a relationship of trust with the stakeholders and goes much further, up to and including the co-production of dissemination materials, the development of new projects, and the joint assessment of the activities. The PES evaluation process at Cidacs is carried out through opinion polls, data on participation in activities and information on the products created within the scope of each research project. To facilitate engagement with the public, the Center maintains a Public Engagement Advisory Committee for Science that includes representatives from public administration, community groups, health professionals, researchers, and other social actors. A total of 20 people are part of this group, and they participate in online meetings (every quarter) and in-person meetings (annually) to discuss transversal topics such as racism, social inequalities, and the importance of health data. Members of the Committee are also invited to participate in specific activities – e.g. discuss projects, produce articles and support dissemination process, according to their areas of expertise and the objective of each initiative. The Committee is linked to a program coordinated by Cidacs, the Global Health Research Unit on Social and Environmental Determinants of Health Inequalities (SEDHI), funded by the National Institute for Health Research (NIHR) of the United Kingdom, which involves researchers from Brazil, Ecuador and the United Kingdom. Nonetheless, the Committee also supports decisions on strategies and activities promoted in other Cidacs projects. 2.3. PES Initiatives for the CIDACS PHC and CIDACS-PHDC projects The initiatives reported here are based on the same model for structuring the procedures and values involved in PES activities, although some adjustments are made to meet the specific needs of each project. To set up the engagement activities for the projects described below, researchers associated with the projects together with the engagement team – made up of communication and anthropology researchers – held meetings to: 1) Map potential participants, encouraging representativeness according to race, gender, age group, region, and different functions/positions; 2) Develop recruitment strategies (use of institutional emails, instant messaging, telephone, and social media to send invitations with a message about the project and the workshop, as well as the gradual sharing of complementary/informative materials about the project); 3) Organize workshop scripts using accessible language, including guiding questions, and train the research team to give space and effectively listen to the experiences of the stakeholders; 4) Develop an evaluation model for the activities and results obtained. All engagement activities are supported by the Cidacs scientific communication and dissemination group. 2.3.1. Cidacs PHC The Cidacs PHC group is dedicated to studying the impact of Primary Health Care (PHC) on the population`s health. In the first phase of the project, the effect of the quality of PHC on child mortality was explored. In its second phase, with a structured PES strategy, the focus has been on deepening findings from the previous phase by including research questions on the determinants of PHC quality. The first engagement activity was a workshop at the Cidacs headquarters in Salvador (Brazil), where fifteen people, including technicians from the area of public health management, health workers, researchers from other institutions and representatives of civil society, discussed the results from the first phase of the project and research questions of the second phase (activity outline in the supplementary material). 2.3.2. Cidacs-PHDC Project There is a collaboration between Cidacs and the Western Cape Provincial Health Data Centre (PHDC) in South Africa that aims to create a Common Data Model (CDM) to study infectious diseases that affect pregnancy, such as gestational syphilis and tuberculosis, with data from Brazil and the Western Cape Province. The creation of a CDM has the objective to structure the databases from each institution according to a unified standard of tables, fields, and relationships designed to harmonize data from different sources. To this end, it uses controlled vocabulary, concepts and codes, ensuring a consistent interpretation of data regardless of its origin. An engagement activity with Big Data experts and health managers was carried out to strengthen the development of the CDM (activity outline in the supplementary material). During the engagement sessions, participants exchanged experiences and discussed topics that contributed to construct a common model that considers the social and economic specificities of the Global South. These discussions are important because they drive the development of a CDM that promotes data standardization from an inclusive and collaborative perspective. Three representatives from Brazil`s public administration and two representatives from the Department of Health of the Western Cape Province of South Africa participated in the first PES activity for this project. 3. Results 3.1. Shared learning based on knowledge integration among multidisciplinary professionals Participants highlighted the opportunity for reciprocal learning and knowledge exchange with diverse professionals at various levels of expertise. They also pointed out that this research model based on the inclusion of ideas from diverse people allows science to be closer to the territory and achieve more relevant, inclusive and representative results. During the meetings, issues were addressed from different perspectives and realities, which resulted in a rich experience of sharing different approaches to solve complex problems. 3.2. Impact on the research projects For the Cidacs PHC team, the meeting with management professionals and health workers provided five main takeaways: i) the need to urgently include racial issues within the scope of the analyses; ii) the importance of identifying other variables to assess the quality of PHC, such as the type of employment contracts and work overload to represent the quality of the workforce; iii) the potential impact of the professional profile and gender of the Health Secretary on the adequacy of municipal management; iv) the context and nuances related the time frame of the research; and, v) the agreement of important topics, such as the time lag between the reception of financial resources and manifestation of improvements in the quality of PHC. The Cidacs PHC team considered the experience fundamental. It strengthened the link between research and practice in the health sector and offered a methodology that values professionals' empirical knowledge. For the Cidacs-PHDC project, the activity allowed the validation of the importance of this movement to build capacity for data interoperability and the application of a CDM, to promote the use of real-world data. All participants recognized that a specific CDM, developed by the OMOP (Observational Medical Outcomes Partnership) is a valid path, from the perspective of open science, to be explored to break down frontiers in health knowledge 1 . However, the data managers who participated in the discussions indicated that the OMOP CDM specifically is more helpful for research and production of knowledge on health, whilst not being particularly useful for the management of health data by state entities. In fact, in both countries, other CDMs are already being tested with a focus on the primary use of health data to support service provision. In this regard, the Digital Health Strategy adopted in Brazil establishes governance for the exchange of information with models agreed upon by the Tripartite Intermanagerial Commission (CIT). Participants noted that reconciliation between academic solutions and management strategies could accelerate knowledge discovery, reduce translational response time and, simultaneously offer timely support for decision-making for citizens, professionals, and managers. 4. Discussion The operationalization of key concepts such as diversity and inclusion are complex tasks. The development and implementation of these processes involve discussions mainly around race and gender, which are structural factors in the processes of construction of inequalities in our region [10] but also intersect with other categories such as socioeconomic status, age, sexual orientation, religious beliefs, ideologies, physical abilities, among others. Another important dimension of diversity is related to the inclusion of schools of thought, which are intrinsically linked to a vast spectrum of representations [ 11] . Additionally, discussing these issues demands considerations regarding how, throughout history, theories and methodologies from the Global North were imported into the Global South without problematizing their epistemological and techno-scientific impact [ 12] . The concept of "coloniality of knowledge", describes how colonialism and imperialism shaped the production of global knowledge, relegating countries from the Global South to a subordinate position [ 13, 14] . It helps to visualize the impact of imperialism on the construction of knowledge to this day. This complex dynamic also affects the adoption of PES as a scientific approach, a concept rarely found in the literature in Brazil and Latin America because the region has a history of collaboration between science and society based on social participation [ 5} . Revolutionary initiatives by activists in popular education and public health, such as those of Paulo Freire [ 15, 16] and Sergio Arouca [ 17] in Brazil, have been fundamental to the construction of a society widely engaged in the fight for rights. The PES activities reported in this paper presented important results due to the efforts to meet the diversity of social groups’ profiles and include different perspectives in research projects. In addition to gender and race as criteria of inclusion profile, other important aspects for the diversity of profiles were considered for the Cidacs PHC project, such as job function, academic background, professional experience, hierarchical level and institution of origin. The Cidacs-PHDC activity, on the other hand, involved a smaller number of participants, due to the complexity and specificity of the topic discussed – data interoperability and CDMs. Nonetheless, an effort was made to represent different government institutions, for a richer discussion. However, the opportunity was used to explore the mapping of target audiences for greater diversity. Understanding the regional context, with a focus on inclusive and diverse strategies that promote cooperation between researchers and society, is essential for interventions related to the engagement process. In this sense, some lessons from Reynolds and Sariola [ 18] permeated our decisions, manifesting in engagement processes such as active listening regarding participants’ everyday experiences, the impact of participants’ contributions on research processes, as well as the establishment of new partnerships and collaborations. This inclusion process also involves some barriers that limit to the adopted strategies. Time was one of the main barriers indicated by all participants, denouncing the lack of sufficient time to address the full volume of discussions. During the activities, it was necessary to strictly manage time so that everyone could express their points of view, and this implies that there were times when interactions needed to be interrupted to ensure that all topics proposed would be covered. Furthermore, the team noted that the inclusion of people from different hierarchical levels in the Cidacs PHC project activity, although important for accessing different points of view, resulted in constraints in the expression of divergent ideas, due to power imbalances. In the case of the Cidacs-PHDC project, the different contexts and languages were also aspects that needed to be noted in the PES process. Also, there was difficulty of implementing some of the participants’ suggestions due to the lack of information in the available databases. However, this also represented an opportunity to reflect on new data sources that could be used, as well as enrich the researchers’ process of actively acknowledging the limitations of their work. Lessons learned include the importance of detailed planning of each stage of the engagement work, from the objective and stakeholder mapping to the scheduling of each session, following recommendations by dos Anjos Fonseca [ 5] . Formulating guiding questions for debate between researchers and participants proved to be very beneficial because it mobilized participants and stimulated discussions. Another important aspect of this relationship built between researchers and participants is to the ethical dimension of public engagement. Important ethical dimensions that make up the framework for participation processes and citizen science [ 19] were contemplated, such as empathy and the construction of communicative spaces, the raising of questions that permeate ethical aspects – such as data ethics and issues of race and gender –, the promotion of dialogue and the fostering of relationships without prejudice. In this sense, communication is fundamental for structuring an ethical and collaborative relationship between researchers and PES participants. The inclusion of communication researchers and an anthropologist in the team was important because it emphasized the importance of transparency, raising awareness among researchers about delivering presentations with an accessible language, and promoting active listening and prior agreement on the program between participants and researchers. This was done through meetings, strategic messages sent to participants before and after the activities, informal conversations and evaluation processes during the meetings. A barrier is being overcome as this intervention demonstrates in practice that science should be produced not only for society but with society. By considering diversity and going beyond the academic frontier with this type of intervention in the health area, Cidacs integrates knowledge and subverts the pattern of elites “deciding for” the masses. This movement is also important for the democratization of knowledge, for increasing trust in research institutions, their production and recommendations. In addition to expanding the understanding of data, PES activities provide additional contextual information that enriches research based on large health databases, connecting the findings to local realities and the concrete needs of the population. 5. Conclusions The experiences reported in this manuscript highlight the strategic role of public engagement with science and in communication for the execution of processes that help to build and strengthen the articulation of knowledge production with everyday reality. This allows the scientific area to engage in dialogue with various social segments that work directly with the research topics of interest. Although the projects are still ongoing, it is evident that combining PES, communication, and interdisciplinarity highlights the critical role of quality listening and meaningful dialogue in identifying common ground and fostering innovations that help mitigate health inequalities. Achieving this requires more inclusive research approaches that embrace diverse perspectives and adapt methodologies to better address the specific needs of populations. We also expect impacts in influencing data experts, policymakers and researchers as well as in developing new initiatives promoting diversity in research teams and participants. Reporting these experiences of cooperation and dialogue, in addition to data analysis and theoretical discussions, allows us to understand the importance of humanizing both health services and science. Expanding repertoires through dialogue and listening has proven to be essential for implementing more inclusive practices that go beyond quantitative indicators, valuing specific contexts and promote meaningful connections. Recognizing that access and capabilities are unequal – both in science and in health care – is a fundamental step to avoid perpetuating inequalities. Scientific methods often fail to consider the specificities of territories and the populations inhabiting them. We recommend building capacity in public communication of science and PES to apply participatory methodologies in these practices. Additionally, it is important to go beyond data and numbers when conducting population health research. By listening and developing inclusive dialogues and connections with different stakeholders and giving up pre-established certainties to expand one’s capacity to welcome other perspectives, it could be possible to implement innovations and contribute to a more equitable future, without repeating past mistakes. Declarations Ethics approval and consent to participate Not applicable Consent for publication Not applicable Availability of data and materials This manuscript does not report data generation or analysis Competing interests The authors declare no competing interests. Funding This work has been financed by The Bill & Melinda Gates Foundation, Grants INV-006196 and INV-061098) Authors' contributions AF, VM, WA, DP, EJ, MA and RL made contributions to the conception AF, VM and WA design of the work DP, MA, RL theoretical discussion AF, VM, WA, AL, JF, DD, EA, MQ, GP, VL, FF, MS, EL, BM, DD support interpretation of the experiences AF, AL, JF, VM, WA, DP, EJ, MA and RL drafted the work AF, VM, WA, AL, JF, DD, EA, MQ, GP, VL, FF, MS, EL, BM, DD, MB, MY developed the discussion AF, DP, RL, MA prepared figures All authors reviewed the manuscript. Acknowledgements Not applicable References Ciapponi, A., Bardach, A., Alcaraz, A., Belizán, M., Jones, D., Comolli, M., & Ruvinsky, S. D. (2019). Taller de priorización de intervenciones para el control del mosquito Aedes aegypti en Latinoamérica y el Caribe: diálogo de políticas. [ Workshop for prioritizing interventions for the control of the Aedes aegypti mosquito in Latin America and the Caribbean: policy dialogue .] Cadernos de Saúde Pública , 35 , e00092918. Velásquez-Jiménez, C. M., Sarmiento, M. I., Vargas, S., Fandiño, V., Puerto-de-Amaya, M. B., Ardila-Sierra, A., & Quintana, E. (2022). Estrategia educativa intercultural para la prevención del cáncer de cuello cérvico uterino en el resguardo de Paujil, Amazonia Colombiana. [ Intercultural educational strategy for the prevention of uterine cervical cancer in the Paujil shelter, Colombian Amazon .] Revista UDCA Actualidad & Divulgación Científica , 25 (SPE). Frech, S., Muha, C. A., Stevens, L. M., Trimble, E. L., Brew, R., Perin, D. P., ... & Kostelecky, B. (2018). Perspectives on strengthening cancer research and control in Latin America through partnerships and diplomacy: experience of the national cancer institute’s center for global health. Journal of Global Oncology , 4 , 1-11. Rubio, M. A., Guevara-Aladino, P., Urbano, M., Cabas, S., Mejia-Arbelaez, C., Rodriguez Espinosa, P., ... & Sarmiento, O. L. (2022). Innovative participatory evaluation methodologies to assess and sustain multilevel impacts of two community-based physical activity programs for women in Colombia. BMC public health , 22 (1), 771. dos Anjos Fonseca, A., Moraes Pimenta, D., Rodrigues Sebastião de Almeida, M., Tourinho Lima, R., Barreto, M. L. and Travassos Ichihara, M. Y. (2023). Public Involvement & Engagement in health inequalities research on COVID-19 pandemic: a case study of CIDACS/FIOCRUZ BAHIA. International Journal of Population Data Science . 5(3). doi: 10.23889/ijpds.v5i3.2133. Paim, J.S. O que é o SUS? [ What is the SUS? ] Rio de Janeiro: Editora Fiocruz, 2009. Paim, J. S. (2018). Sistema Único de Saúde (SUS) aos 30 anos. [ 30 years of the Unified Health System. ] Ciência & Saúde Coletiva , 23 (6), 1723-1728. Barreto, M. L., Ichihara, M. Y., Almeida, B. D. A., Barreto, M. E., Cabral, L., Fiaccone, R. L., ... & Smeeth, L. (2019). The centre for data and knowledge integration for health (CIDACS): linking health and social data in Brazil. International journal of population data science , 4 (2). Mussi, R. F. F., Flores, F. F., Almeida, C. B. (2021). Pressupostos para a elaboração de relato de experiência como conhecimento científico. [ Assumptions for the preparation of experience reports as scientific knowledge. ] Revista práxis educacional , v. 17, n. 48, p. 60-77. Gonzalez, L. Por um Feminismo Afro-Latino-Americano. [ For an Afro-Latin American Feminism. ] In: Gonzalez, L. (2018) Primavera para as Rosas Negras. [ Spring for the Black Roses. ] São Paulo: UCPA Editora. Graham, P. W., Kim, M. M., Clinton-Sherrod, A. M., Yaros, A., Richmond, A. N., Jackson, M., & Corbie-Smith, G. (2016). What is the role of culture, diversity, and community engagement in transdisciplinary translational science? Translational behavioral medicine , 6(1), 115-124. Fortes, C. Teorias que servem e teorias que não servem: dinâmicas familiares e de género em Cabo Verde e os desafios da importação teórica. [ Theories that work and theories that don’t: family and gender dynamics in Cape Verde and the challenges of theoretical import. ] In: Lobo, A., Dias, J. B. (Orgs.). Mundos em circulação: perspectivas sobre Cabo Verde. [ Worlds in circulation: perspectives on Cape Verde. ] Brasília: ABA Publicações; LetrasLivres / Cidade da Praia: Edições Uni-CV, 2016. Quijano, A. (2005). A colonialidade do saber: eurocentrismo e ciências sociais, perspectivas latino-americanas. [ The coloniality of knowledge: Eurocentrism and social sciences, Latin American perspectives. ] Buenos Aires: CLACSO. p. 117-142. Poskett, Horizons (2022). The Global Origins of Modern Science . Mariner Books. Freire, P (2018a). Educação e mudança. [ Education and change .] 38ª ed. Rio de Janeiro/São Paulo: Paz e Terra. Freire, P (2018b). Pedagogia do Oprimido. [ Pedagogy of the oppressed. ] 66ª ed. Rio de Janeiro/São Paulo: Paz e Terra. Arouca, S. (2003). O dilema preventivista: contribuição para a compreensão e crítica da medicina preventiva. [ The preventive dilemma: contribution to the understanding and criticism of preventive medicine. ] Rio de Janeiro: Editora Fiocruz; São Paulo: Editora da Unesp. E-book. doi: 10.7476/9788575416105. ISBN: 85-7139-507-1. Reynolds, L., Sariola, S. (2018). The ethics and politics of community engagement in global health research. Critical Public Health, v. 28, n. 3, p. 257-268. Groot, B., Abma, T. (2022). Ethics framework for citizen science and public and patient participation in research. BMC Med Ethics 23. doi: 10.1186/s12910-022-00761-4 Footnotes The OMOP CDM is supported by the Observational Health Data Sciences and Informatics (OHDSI) community, whose mission is to improve the health of the population by empowering researchers to collaboratively generate evidence that promotes better health decisions and improved care. Although the OMOP CDM is primarily designed around clinical data modeling, Cidacs saw an opportunity to collaborate with the international community by promoting the inclusion of socioeconomic data in studies conducted, thus expanding the applicability of the CDM in the Global South. Additional Declarations No competing interests reported. Supplementary Files AdditionalFile1.docx File name: Additional File 1 File Format: .doc Title of data: INVITATION FOR COPRODUCTION OF SCIENTIFIC ARTICLE & QUESTIONS SENT Description of data: Content of e-mail to invite co-authorship of stakeholders AdditionalFile2.docx File name: Additional File 2 File Format: .doc Title of data: AGENDA FOR THE PES ACTIVITY - CIDACS PHC PROJECT Description of data: Agenda of the day’s activities AdditionalFile3.docx File name: Additional File 3 File Format: .doc Title of data: AGENDA FOR THE PES ACTIVITY - CIDACS-PHDC PROJECT Description of data: Agenda of the day’s activities Cite Share Download PDF Status: Published Journal Publication published 04 Apr, 2025 Read the published version in BMC Medical Research Methodology → Version 1 posted Editorial decision: Revision requested 18 Feb, 2025 Reviews received at journal 17 Feb, 2025 Reviewers agreed at journal 04 Feb, 2025 Reviews received at journal 03 Feb, 2025 Reviewers agreed at journal 29 Jan, 2025 Reviewers agreed at journal 28 Jan, 2025 Reviewers invited by journal 13 Jan, 2025 Editor assigned by journal 10 Jan, 2025 Submission checks completed at journal 10 Jan, 2025 First submitted to journal 10 Jan, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. 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design\u003c/p\u003e","description":"","filename":"Figure1WorkflowofpublicengagementwithscienceactivitiesatCidacs.jpg","url":"https://assets-eu.researchsquare.com/files/rs-5554797/v1/62935053870fca1429dcb56a.jpg"},{"id":78140013,"identity":"9f2fdc16-8556-4079-a71f-83cff9caa694","added_by":"auto","created_at":"2025-03-10 10:05:54","extension":"png","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":285087,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eLessons learned and impacts of PESC in both PESC initiatives\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eSource: authors’ own design\u003c/p\u003e","description":"","filename":"Figure2LessonsLearnedandImpacts.png","url":"https://assets-eu.researchsquare.com/files/rs-5554797/v1/2b73b1ea46b6161a5def2447.png"},{"id":80082235,"identity":"a403618f-32f1-46d5-b3c5-9e37f9079f9a","added_by":"auto","created_at":"2025-04-07 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stakeholders\u003c/p\u003e","description":"","filename":"AdditionalFile1.docx","url":"https://assets-eu.researchsquare.com/files/rs-5554797/v1/e983a700b6ac0605768155d9.docx"},{"id":78140011,"identity":"b3585e50-4e89-43c5-95f2-7b364642f223","added_by":"auto","created_at":"2025-03-10 10:05:54","extension":"docx","order_by":2,"title":"","display":"","copyAsset":false,"role":"supplement","size":35754,"visible":true,"origin":"","legend":"\u003cp\u003eFile name: Additional File 2\u003c/p\u003e\n\u003cp\u003eFile Format: .doc\u003c/p\u003e\n\u003cp\u003eTitle of data: AGENDA FOR THE PES ACTIVITY - CIDACS PHC PROJECT\u003c/p\u003e\n\u003cp\u003eDescription of data: Agenda of the day’s activities\u003c/p\u003e","description":"","filename":"AdditionalFile2.docx","url":"https://assets-eu.researchsquare.com/files/rs-5554797/v1/7db770d58062921938bcd644.docx"},{"id":78141056,"identity":"b72d78e9-bdd8-4d83-8977-0e31261ea4da","added_by":"auto","created_at":"2025-03-10 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Context","content":"\u003cp\u003ePublications related to public engagement in science (PES) in health research increased intensively: around 79% (54 to 215 articles) between 2013 and 2023 on the PubMed platform; a 30% increase on Scielo, in publications on public and community engagement and social participation between 2020 and 2023. The initiatives range from actions in which participants influence health decisions \u003csup\u003e[1,2]\u003c/sup\u003e, suggesting improvements in health services \u003csup\u003e[3]\u003c/sup\u003e or participating in research that applies participatory methodologies, as in Rubio et al. \u003csup\u003e[4]\u003c/sup\u003e However, this volume is much lower when it comes to PES for health research that explores Big Data. Only 47 such records were found between 2015 and 2024.\u003c/p\u003e \u003cp\u003ePES refers to one of the levels of participation of different social segments in the process of constructing scientific knowledge \u003csup\u003e[5]\u003c/sup\u003e. Initially developed in countries of the Global North, it is better known in Brazil as social and community participation, deeply linked to the struggle for human rights in alignment with social movements. A good example of this has been the creation and development of the Brazilian Unified Health System (SUS) in 1988, which aimed to reduce health inequities in the country by guaranteeing universal, comprehensive, and free access to health services for all \u003csup\u003e[6,7]\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eSome of the actors that participated in the social struggles for the establishment of the SUS, from both academia and public management, founded the Center for Data and Knowledge Integration for Health (Cidacs/Fiocruz Bahia) in 2016. The research center was created with the aim of carrying out multidisciplinary studies that use the linking of large administrative databases to generate evidence on the social determinants of health and to assess the impact of public policies on the health of the population, using Real-World Data (RWD) \u003csup\u003e[8]\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eThis article presents a methodological approach to PES based on strategies to enable inclusion and diversity in health research carried out with RWD. Using two experiences of Cidacs research projects related to Primary Health Care (Cidacs PHC) and data interoperability (Cidacs-PHDC), we will present the challenges and solutions developed, seeking to contribute to the systematization of a strategy in research processes that promote inclusion and diversity in knowledge production. We will also demonstrate the impacts and lessons learned from these initiatives.\u003c/p\u003e"},{"header":"2. Methods","content":"\u003cp\u003eThe cases presented involve two research projects carried out at Cidacs that included different audiences \u0026ndash; community representatives, health professionals, and health management technicians \u0026ndash; from the onset of the research process. It is important to highlight that the production of this article itself is one of the results of this inclusive cooperation strategy, since some participants are also coauthors of this work.\u003c/p\u003e\n\u003cp\u003eTo ensure that the manuscript reflected the perspectives of those involved in PES activities, all participants were invited to contribute. The invitation was sent via an email containing five open-ended questions, with the option to respond via an attached document or an online form. In total, 18 people were invited, of whom 7 agreed to participate, submitting contributions reflecting their views on the activities undertaken.\u003c/p\u003e\n\u003cp\u003eTo present the initiatives of interest, we adopted the case report \u0026ndash; a form of knowledge production based on critical reflection from an academic or professional experience. Based on a script \u003csup\u003e[9]\u003c/sup\u003e we systematized the inclusive experiences of PES based on their contextualization, the methodological procedures adopted for each intervention, and the characterization of the research projects, in terms of time, space, activities, audiences, ethical aspects, among others.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e2.1. A model of public engagement with science for health research\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAt CIDACS, PES focuses on sharing experiences and knowledge between researchers and stakeholders of the health system to generate evidence that supports public policies. The work is done in collaboration with managers and members of social groups directly involved in the topics studied, especially those related to social determinants of health. The involvement of these audiences is carefully planned and implemented progressively, considering their specific demands and needs.\u003c/p\u003e\n\u003cp\u003eThese activities include consulting, interpreting, validating information and co-creating knowledge dissemination products. The groups invited to participate in these initiatives are identified according to the study objects of each project, and range from representatives of specific groups \u0026ndash; e.g. traditional populations, favela residents \u0026ndash;, to public managers, policymakers and intergovernmental organizations \u0026ndash; such as the World Health Organization (WHO) and the United Nations (UN) \u0026ndash;, to advocacy groups and civil entities, health workers, media and education professionals, as well as students.\u003c/p\u003e\n\u003cp\u003eWithin the scope of this work, the Cidacs team develops a series of tasks, ranging from research to evaluation, according to the workflow below (Figure 1).\u003c/p\u003e\n\u003cp\u003eSince the conception of each research project, researchers have indicated the intention of carrying out PES. After mapping relevant stakeholders, a series of specific actions are developed throughout the project to promote dialogue with them. This entire journey involves a step-by-step process that begins with building a relationship of trust with the stakeholders and goes much further, up to and including the co-production of dissemination materials, the development of new projects, and the joint assessment of the activities. The PES evaluation process at Cidacs is carried out through opinion polls, data on participation in activities and information on the products created within the scope of each research project.\u003c/p\u003e\n\u003cp\u003eTo facilitate engagement with the public, the Center maintains a Public Engagement Advisory Committee for Science that includes representatives from public administration, community groups, health professionals, researchers, and other social actors. A total of 20 people are part of this group, and they participate in online meetings (every quarter) and in-person meetings (annually) to discuss transversal topics such as racism, social inequalities, and the importance of health data. Members of the Committee are also invited to participate in specific activities \u0026ndash; e.g. discuss projects, produce articles and support dissemination process, according to their areas of expertise and the objective of each initiative. The Committee is linked to a program coordinated by Cidacs, the Global Health Research Unit on Social and Environmental Determinants of Health Inequalities (SEDHI), funded by the National Institute for Health Research (NIHR) of the United Kingdom, which involves researchers from Brazil, Ecuador and the United Kingdom. Nonetheless, the Committee also supports decisions on strategies and activities promoted in other Cidacs projects.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e2.3. PES Initiatives for the CIDACS PHC and CIDACS-PHDC projects\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe initiatives reported here are based on the same model for structuring the procedures and values involved in PES activities, although some adjustments are made to meet the specific needs of each project. To set up the engagement activities for the projects described below, researchers associated with the projects together with the engagement team \u0026ndash; made up of communication and anthropology researchers \u0026ndash; held meetings to: 1) Map potential participants, encouraging representativeness according to race, gender, age group, region, and different functions/positions; 2) Develop recruitment strategies (use of institutional emails, instant messaging, telephone, and social media to send invitations with a message about the project and the workshop, as well as the gradual sharing of complementary/informative materials about the project); 3) Organize workshop scripts using accessible language, including guiding questions, and train the research team to give space and effectively listen to the experiences of the stakeholders; 4) Develop an evaluation model for the activities and results obtained. All engagement activities are supported by the Cidacs scientific communication and dissemination group.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e2.3.1. Cidacs PHC\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe Cidacs PHC group is dedicated to studying the impact of Primary Health Care (PHC) on the population`s health. In the first phase of the project, the effect of the quality of PHC on child mortality was explored. In its second phase, with a structured PES strategy, the focus has been on deepening findings from the previous phase by including research questions on the determinants of PHC quality. The first engagement activity was a workshop at the Cidacs headquarters in Salvador (Brazil), where fifteen people, including technicians from the area of public health management, health workers, researchers from other institutions and representatives of civil society, discussed the results from the first phase of the project and research questions of the second phase (activity outline in the supplementary material).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e2.3.2. Cidacs-PHDC Project\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThere is a collaboration between Cidacs and the Western Cape Provincial Health Data Centre (PHDC) in South Africa that aims to create a Common Data Model (CDM) to study infectious diseases that affect pregnancy, such as gestational syphilis and tuberculosis, with data from Brazil and the Western Cape Province. The creation of a CDM has the objective to structure the databases from each institution according to a unified standard of tables, fields, and relationships designed to harmonize data from different sources. To this end, it uses controlled vocabulary, concepts and codes, ensuring a consistent interpretation of data regardless of its origin. An engagement activity with Big Data experts and health managers was carried out to strengthen the development of the CDM (activity outline in the supplementary material). During the engagement sessions, participants exchanged experiences and discussed topics that contributed to construct a common model that considers the social and economic specificities of the Global South. These discussions are important because they drive the development of a CDM that promotes data standardization from an inclusive and collaborative perspective. Three representatives from Brazil`s public administration and two representatives from the Department of Health of the Western Cape Province of South Africa participated in the first PES activity for this project.\u003c/p\u003e"},{"header":"3. Results","content":"\u003cp\u003e\u003cstrong\u003e\u003cem\u003e3.1. Shared learning based on knowledge integration among multidisciplinary professionals\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eParticipants highlighted the opportunity for reciprocal learning and knowledge exchange with diverse professionals at various levels of expertise. They also pointed out that this research model based on the inclusion of ideas from diverse people allows science to be closer to the territory and achieve more relevant, inclusive and representative results.\u003c/p\u003e\n\u003cp\u003eDuring the meetings, issues were addressed from different perspectives and realities, which resulted in a rich experience of sharing different approaches to solve complex problems.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003e3.2. Impact on the research projects\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eFor the Cidacs PHC team, the meeting with management professionals and health workers provided five main takeaways: i) the need to urgently include racial issues within the scope of the analyses; ii) the importance of identifying other variables to assess the quality of PHC, such as the type of employment contracts and work overload to represent the quality of the workforce; iii) the potential impact of the professional profile and gender of the Health Secretary on the adequacy of municipal management; iv) the context and nuances related the time frame of the research; and, v) the agreement of important topics, such as the time lag between the reception of financial resources and manifestation of improvements in the quality of PHC.\u003c/p\u003e\n\u003cp\u003eThe Cidacs PHC team considered the experience fundamental. It strengthened the link between research and practice in the health sector and offered a methodology that values professionals\u0026apos; empirical knowledge.\u003c/p\u003e\n\u003cp\u003eFor the Cidacs-PHDC project, the activity allowed the validation of the importance of this movement to build capacity for data interoperability and the application of a CDM, to promote the use of real-world data. All participants recognized that a specific CDM, developed by the OMOP (Observational Medical Outcomes Partnership) is a valid path, from the perspective of open science, to be explored to break down frontiers in health knowledge\u003ca href=\"#_ftn1\" name=\"_ftnref1\" title=\"\"\u003e\u003c/a\u003e\u003csup\u003e1\u003c/sup\u003e. However, the data managers who participated in the discussions indicated that the OMOP CDM specifically is more helpful for research and production of knowledge on health, whilst not being particularly useful for the management of health data by state entities. In fact, in both countries, other CDMs are already being tested with a focus on the primary use of health data to support service provision.\u003c/p\u003e\n\u003cp\u003eIn this regard, the Digital Health Strategy adopted in Brazil establishes governance for the exchange of information with models agreed upon by the Tripartite Intermanagerial Commission (CIT). Participants noted that reconciliation between academic solutions and management strategies could accelerate knowledge discovery, reduce translational response time and, simultaneously offer timely support for decision-making for citizens, professionals, and managers.\u003c/p\u003e"},{"header":"4. Discussion","content":"\u003cp\u003eThe operationalization of key concepts such as diversity and inclusion are complex tasks. The development and implementation of these processes involve discussions mainly around race and gender, which are structural factors in the processes of construction of inequalities in our region \u003csup\u003e[10]\u0026nbsp;\u003c/sup\u003ebut also intersect with other categories such as socioeconomic status, age, sexual orientation, religious beliefs, ideologies, physical abilities, among others. Another important dimension of diversity is related to the inclusion of schools of thought, which are intrinsically linked to a vast spectrum of representations \u003csup\u003e[\u003c/sup\u003e\u003csup\u003e11]\u003c/sup\u003e.\u003c/p\u003e\n\u003cp\u003eAdditionally, discussing these issues demands considerations regarding how, throughout history, theories and methodologies from the Global North were imported into the Global South without problematizing their epistemological and techno-scientific impact \u003csup\u003e[\u003c/sup\u003e\u003csup\u003e12]\u003c/sup\u003e. The concept of \u0026quot;coloniality of knowledge\u0026quot;, describes how colonialism and imperialism shaped the production of global knowledge, relegating countries from the Global South to a subordinate position \u003csup\u003e[\u003c/sup\u003e\u003csup\u003e13, 14]\u003c/sup\u003e. It helps to visualize the impact of imperialism on the construction of knowledge to this day.\u003c/p\u003e\n\u003cp\u003eThis complex dynamic also affects the adoption of PES as a scientific approach, a concept rarely found in the literature in Brazil and Latin America because the region has a history of collaboration between science and society based on social participation \u003csup\u003e[\u003c/sup\u003e\u003csup\u003e5}\u003c/sup\u003e. Revolutionary initiatives by activists in popular education and public health, such as those of Paulo Freire \u003csup\u003e[\u003c/sup\u003e\u003csup\u003e15, 16]\u0026nbsp;\u003c/sup\u003e and Sergio Arouca \u003csup\u003e[\u003c/sup\u003e\u003csup\u003e17]\u003c/sup\u003e in Brazil, have been fundamental to the construction of a society widely engaged in the fight for rights.\u003c/p\u003e\n\u003cp\u003eThe PES activities reported in this paper presented important results due to the efforts to meet the diversity of social groups\u0026rsquo; profiles and include different perspectives in research projects. In addition to gender and race as criteria of inclusion profile, other important aspects for the diversity of profiles were considered for the Cidacs PHC project, such as job function, academic background, professional experience, hierarchical level and institution of origin. The Cidacs-PHDC activity, on the other hand, involved a smaller number of participants, due to the complexity and specificity of the topic discussed \u0026ndash; data interoperability and CDMs. Nonetheless, an effort was made to represent different government institutions, for a richer discussion. However, the opportunity was used to explore the mapping of target audiences for greater diversity.\u003c/p\u003e\n\u003cp\u003eUnderstanding the regional context, with a focus on inclusive and diverse strategies that promote cooperation between researchers and society, is essential for interventions related to the engagement process. In this sense, some lessons from Reynolds and Sariola \u003csup\u003e[\u003c/sup\u003e\u003csup\u003e18]\u003c/sup\u003e permeated our decisions, manifesting in engagement processes such as active listening regarding participants\u0026rsquo; everyday experiences, the impact of participants\u0026rsquo; contributions on research processes, as well as the establishment of new partnerships and collaborations.\u003c/p\u003e\n\u003cp\u003eThis inclusion process also involves some barriers that limit to the adopted strategies. Time was one of the main barriers indicated by all participants, denouncing the lack of sufficient time to address the full volume of discussions. During the activities, it was necessary to strictly manage time so that everyone could express their points of view, and this implies that there were times when interactions needed to be interrupted to ensure that all topics proposed would be covered.\u003c/p\u003e\n\u003cp\u003eFurthermore, the team noted that the inclusion of people from different hierarchical levels in the Cidacs PHC project activity, although important for accessing different points of view, resulted in constraints in the expression of divergent ideas, due to power imbalances. In the case of the Cidacs-PHDC project, the different contexts and languages were also aspects that needed to be noted in the PES process. Also, there was difficulty of implementing some of the participants\u0026rsquo; suggestions due to the lack of information in the available databases. However, this also represented an opportunity to reflect on new data sources that could be used, as well as enrich the researchers\u0026rsquo; process of actively acknowledging the limitations of their work.\u003c/p\u003e\n\u003cp\u003eLessons learned include the importance of detailed planning of each stage of the engagement work, from the objective and stakeholder mapping to the scheduling of each session, following recommendations by dos Anjos Fonseca \u003csup\u003e[\u003c/sup\u003e\u003csup\u003e5]\u003c/sup\u003e. Formulating guiding questions for debate between researchers and participants proved to be very beneficial because it mobilized participants and stimulated discussions.\u003c/p\u003e\n\u003cp\u003eAnother important aspect of this relationship built between researchers and participants is to the ethical dimension of public engagement. Important ethical dimensions that make up the framework for participation processes and citizen science \u003csup\u003e[\u003c/sup\u003e\u003csup\u003e19]\u003c/sup\u003e were contemplated, such as empathy and the construction of communicative spaces, the raising of questions that permeate ethical aspects \u0026ndash; such as data ethics and issues of race and gender \u0026ndash;, the promotion of dialogue and the fostering of relationships without prejudice.\u003c/p\u003e\n\u003cp\u003eIn this sense, communication is fundamental for structuring an ethical and collaborative relationship between researchers and PES participants. The inclusion of communication researchers and an anthropologist in the team was important because it emphasized the importance of transparency, raising awareness among researchers about delivering presentations with an accessible language, and promoting active listening and prior agreement on the program between participants and researchers. This was done through meetings, strategic messages sent to participants before and after the activities, informal conversations and evaluation processes during the meetings.\u003c/p\u003e\n\u003cp\u003eA barrier is being overcome as this intervention demonstrates in practice that science should be produced not only for society but with society. By considering diversity and going beyond the academic frontier with this type of intervention in the health area, Cidacs integrates knowledge and subverts the pattern of elites \u0026ldquo;deciding for\u0026rdquo; the masses. This movement is also important for the democratization of knowledge, for increasing trust in research institutions, their production and recommendations. In addition to expanding the understanding of data, PES activities provide additional contextual information that enriches research based on large health databases, connecting the findings to local realities and the concrete needs of the population.\u003c/p\u003e"},{"header":"5. Conclusions","content":"\u003cp\u003eThe experiences reported in this manuscript highlight the strategic role of public engagement with science and in communication for the execution of processes that help to build and strengthen the articulation of knowledge production with everyday reality. This allows the scientific area to engage in dialogue with various social segments that work directly with the research topics of interest.\u003c/p\u003e\n\u003cp\u003eAlthough the projects are still ongoing, it is evident that combining PES, communication, and interdisciplinarity highlights the critical role of quality listening and meaningful dialogue in identifying common ground and fostering innovations that help mitigate health inequalities. Achieving this requires more inclusive research approaches that embrace diverse perspectives and adapt methodologies to better address the specific needs of populations. We also expect impacts in influencing data experts, policymakers and researchers as well as in developing new initiatives promoting diversity in research teams and participants.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eReporting these experiences of cooperation and dialogue, in addition to data analysis and theoretical discussions, allows us to understand the importance of humanizing both health services and science. Expanding repertoires through dialogue and listening has proven to be essential for implementing more inclusive practices that go beyond quantitative indicators, valuing specific contexts and promote meaningful connections.\u003c/p\u003e\n\u003cp\u003eRecognizing that access and capabilities are unequal \u0026ndash; both in science and in health care \u0026ndash; is a fundamental step to avoid perpetuating inequalities. Scientific methods often fail to consider the specificities of territories and the populations inhabiting them. We recommend building capacity in public communication of science and PES to apply participatory methodologies in these practices. Additionally, it is important to go beyond data and numbers when conducting population health research. By listening and developing inclusive dialogues and connections with different stakeholders and giving up pre-established certainties to expand one\u0026rsquo;s capacity to welcome other perspectives, it could be possible to implement innovations and contribute to a more equitable future, without repeating past mistakes.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis manuscript does not report data generation or analysis\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis work has been financed by The Bill \u0026amp; Melinda Gates Foundation, Grants INV-006196 and INV-061098)\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026apos; contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAF, VM, WA, DP, EJ, MA and RL made contributions to the conception\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eAF, VM and WA design of the work\u003c/p\u003e\n\u003cp\u003eDP, MA, RL theoretical discussion\u003c/p\u003e\n\u003cp\u003eAF, VM, WA, AL, JF, DD, EA, MQ, GP, VL, FF, MS, EL, BM, DD support interpretation of the experiences\u003c/p\u003e\n\u003cp\u003eAF, AL, JF, VM, WA, DP, EJ, MA and RL drafted the work\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eAF, VM, WA, AL, JF, DD, EA, MQ, GP, VL, FF, MS, EL, BM, DD, MB, MY developed the discussion\u003c/p\u003e\n\u003cp\u003eAF, DP, RL, MA prepared figures\u003c/p\u003e\n\u003cp\u003eAll authors reviewed the manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n \u003cli\u003eCiapponi, A., Bardach, A., Alcaraz, A., Beliz\u0026aacute;n, M., Jones, D., Comolli, M., \u0026amp; Ruvinsky, S. D. (2019). Taller de priorizaci\u0026oacute;n de intervenciones para el control del mosquito Aedes aegypti en Latinoam\u0026eacute;rica y el Caribe: di\u0026aacute;logo de pol\u0026iacute;ticas. [\u003cem\u003eWorkshop for prioritizing interventions for the control of the Aedes aegypti mosquito in Latin America and the Caribbean: policy dialogue\u003c/em\u003e.]\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003cem\u003eCadernos de Sa\u0026uacute;de P\u0026uacute;blica\u003c/em\u003e, \u003cem\u003e35\u003c/em\u003e, e00092918.\u003c/li\u003e\n \u003cli\u003eVel\u0026aacute;squez-Jim\u0026eacute;nez, C. M., Sarmiento, M. I., Vargas, S., Fandi\u0026ntilde;o, V., Puerto-de-Amaya, M. B., Ardila-Sierra, A., \u0026amp; Quintana, E. (2022). Estrategia educativa intercultural para la prevenci\u0026oacute;n del c\u0026aacute;ncer de cuello c\u0026eacute;rvico uterino en el resguardo de Paujil, Amazonia Colombiana. [\u003cem\u003eIntercultural educational strategy for the prevention of uterine cervical cancer in the Paujil shelter, Colombian Amazon\u003c/em\u003e.] \u003cem\u003eRevista UDCA Actualidad \u0026amp; Divulgaci\u0026oacute;n Cient\u0026iacute;fica\u003c/em\u003e, \u003cem\u003e25\u003c/em\u003e(SPE).\u003c/li\u003e\n \u003cli\u003eFrech, S., Muha, C. A., Stevens, L. M., Trimble, E. L., Brew, R., Perin, D. P., ... \u0026amp; Kostelecky, B. (2018). Perspectives on strengthening cancer research and control in Latin America through partnerships and diplomacy: experience of the national cancer institute\u0026rsquo;s center for global health. \u003cem\u003eJournal of Global Oncology\u003c/em\u003e, \u003cem\u003e4\u003c/em\u003e, 1-11.\u003c/li\u003e\n \u003cli\u003eRubio, M. A., Guevara-Aladino, P., Urbano, M., Cabas, S., Mejia-Arbelaez, C., Rodriguez Espinosa, P., ... \u0026amp; Sarmiento, O. L. (2022). Innovative participatory evaluation methodologies to assess and sustain multilevel impacts of two community-based physical activity programs for women in Colombia. \u003cem\u003eBMC public health\u003c/em\u003e, \u003cem\u003e22\u003c/em\u003e(1), 771.\u003c/li\u003e\n \u003cli\u003edos Anjos Fonseca, A., Moraes Pimenta, D., Rodrigues Sebasti\u0026atilde;o de Almeida, M., Tourinho Lima, R., Barreto, M. L. and Travassos Ichihara, M. Y. (2023). Public Involvement \u0026amp; Engagement in health inequalities research on COVID-19 pandemic: a case study of CIDACS/FIOCRUZ BAHIA. \u003cem\u003eInternational Journal of Population Data Science\u003c/em\u003e. 5(3). doi: 10.23889/ijpds.v5i3.2133.\u003c/li\u003e\n \u003cli\u003ePaim, J.S. O que \u0026eacute; o SUS? [\u003cem\u003eWhat is the SUS?\u003c/em\u003e] Rio de Janeiro: Editora Fiocruz, 2009.\u003c/li\u003e\n \u003cli\u003ePaim, J. S. (2018). Sistema \u0026Uacute;nico de Sa\u0026uacute;de (SUS) aos 30 anos. [\u003cem\u003e30 years of the Unified Health System.\u003c/em\u003e] \u003cem\u003eCi\u0026ecirc;ncia \u0026amp; Sa\u0026uacute;de Coletiva\u003c/em\u003e, \u003cem\u003e23\u003c/em\u003e(6), 1723-1728.\u003c/li\u003e\n \u003cli\u003eBarreto, M. L., Ichihara, M. Y., Almeida, B. D. A., Barreto, M. E., Cabral, L., Fiaccone, R. L., ... \u0026amp; Smeeth, L. (2019). The centre for data and knowledge integration for health (CIDACS): linking health and social data in Brazil. \u003cem\u003eInternational journal of population data science\u003c/em\u003e, \u003cem\u003e4\u003c/em\u003e(2).\u003c/li\u003e\n \u003cli\u003eMussi, R. F. F., Flores, F. F., Almeida, C. B. (2021). Pressupostos para a elabora\u0026ccedil;\u0026atilde;o de relato de experi\u0026ecirc;ncia como conhecimento cient\u0026iacute;fico. [\u003cem\u003eAssumptions for the preparation of experience reports as scientific knowledge.\u003c/em\u003e] \u003cem\u003eRevista pr\u0026aacute;xis educacional\u003c/em\u003e, v. 17, n. 48, p. 60-77.\u003c/li\u003e\n \u003cli\u003eGonzalez, L. Por um Feminismo Afro-Latino-Americano. [\u003cem\u003eFor an Afro-Latin American Feminism.\u003c/em\u003e] In: Gonzalez, L. (2018) Primavera para as Rosas Negras. [\u003cem\u003eSpring for the Black Roses.\u003c/em\u003e] S\u0026atilde;o Paulo: UCPA Editora.\u003c/li\u003e\n \u003cli\u003eGraham, P. W., Kim, M. M., Clinton-Sherrod, A. M., Yaros, A., Richmond, A. N., Jackson, M., \u0026amp; Corbie-Smith, G. (2016). What is the role of culture, diversity, and community engagement in transdisciplinary translational science? \u003cem\u003eTranslational behavioral medicine\u003c/em\u003e, 6(1), 115-124.\u003c/li\u003e\n \u003cli\u003eFortes, C. Teorias que servem e teorias que n\u0026atilde;o servem: din\u0026acirc;micas familiares e de g\u0026eacute;nero em Cabo Verde e os desafios da importa\u0026ccedil;\u0026atilde;o te\u0026oacute;rica. [\u003cem\u003eTheories that work and theories that don\u0026rsquo;t: family and gender dynamics in Cape Verde and the challenges of theoretical import.\u003c/em\u003e] In: Lobo, A., Dias, J. B. (Orgs.). Mundos em circula\u0026ccedil;\u0026atilde;o: perspectivas sobre Cabo Verde. [\u003cem\u003eWorlds in circulation: perspectives on Cape Verde.\u003c/em\u003e] Bras\u0026iacute;lia: ABA Publica\u0026ccedil;\u0026otilde;es; LetrasLivres / Cidade da Praia: Edi\u0026ccedil;\u0026otilde;es Uni-CV, 2016.\u003c/li\u003e\n \u003cli\u003eQuijano, A. (2005). A colonialidade do saber: eurocentrismo e ci\u0026ecirc;ncias sociais, perspectivas latino-americanas. [\u003cem\u003eThe coloniality of knowledge: Eurocentrism and social sciences, Latin American perspectives.\u003c/em\u003e] Buenos Aires: CLACSO. p. 117-142.\u003c/li\u003e\n \u003cli\u003ePoskett, Horizons (2022). \u003cem\u003eThe Global Origins of Modern Science\u003c/em\u003e. Mariner Books.\u003c/li\u003e\n \u003cli\u003eFreire, P (2018a). Educa\u0026ccedil;\u0026atilde;o e mudan\u0026ccedil;a. [\u003cem\u003eEducation and change\u003c/em\u003e.] 38\u0026ordf; ed. Rio de Janeiro/S\u0026atilde;o Paulo: Paz e Terra.\u003c/li\u003e\n \u003cli\u003eFreire, P (2018b). Pedagogia do Oprimido. [\u003cem\u003ePedagogy of the oppressed.\u003c/em\u003e] 66\u0026ordf; ed. Rio de Janeiro/S\u0026atilde;o Paulo: Paz e Terra.\u003c/li\u003e\n \u003cli\u003eArouca, S. (2003). O dilema preventivista: contribui\u0026ccedil;\u0026atilde;o para a compreens\u0026atilde;o e cr\u0026iacute;tica da medicina preventiva. [\u003cem\u003eThe preventive dilemma: contribution to the understanding and criticism of preventive medicine.\u003c/em\u003e] Rio de Janeiro: Editora Fiocruz; S\u0026atilde;o Paulo: Editora da Unesp. E-book. doi: 10.7476/9788575416105. ISBN: 85-7139-507-1.\u003c/li\u003e\n \u003cli\u003eReynolds, L., Sariola, S. (2018). The ethics and politics of community engagement in global health research. Critical Public Health, v. 28, n. 3, p. 257-268.\u003c/li\u003e\n \u003cli\u003eGroot, B., Abma, T. (2022). Ethics framework for citizen science and public and patient participation in research. BMC Med Ethics 23. doi: 10.1186/s12910-022-00761-4\u003c/li\u003e\n\u003c/ol\u003e"},{"header":"Footnotes","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003e The OMOP CDM is supported by the Observational Health Data Sciences and Informatics (OHDSI) community, whose mission is to improve the health of the population by empowering researchers to collaboratively generate evidence that promotes better health decisions and improved care. Although the OMOP CDM is primarily designed around clinical data modeling, Cidacs saw an opportunity to collaborate with the international community by promoting the inclusion of socioeconomic data in studies conducted, thus expanding the applicability of the CDM in the Global South.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"
[email protected]","identity":"bmc-medical-research-methodology","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bmrm","sideBox":"Learn more about [BMC Medical Research Methodology](http://bmcmedresmethodol.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bmrm/default.aspx","title":"BMC Medical Research Methodology","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"","lastPublishedDoi":"10.21203/rs.3.rs-5554797/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-5554797/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003ePublic engagement with science (PES) initiatives in health research that use big data to analyze social inequalities requires strategies and methods adapted to the contexts of countries in the Global South. In Brazil, where there is a history of social participation in research and public policymaking, a research center that uses administrative, real-world data to produce relevant scientific evidence for collective and individual decision-making incorporates inclusion and diversity as key elements to connect knowledge production with the real world.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe experiences of two research projects are described based on a contextualization of the initiatives and subsequent description of the methodological procedures adopted for both interventions, including the definition of target audiences, activities, and ethical aspects, among others. Both projects are centered around the study of Primary Health Care and Data Interoperability and engage participants from public management, health workers, researchers, and civil society representatives.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe participants' collaboration impacted on the researchers' decisions, which began to have a closer understanding of the challenges faced by the participants in their daily work in relation to each of the research themes. This 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.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe 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.\u003c/p\u003e","manuscriptTitle":"Public Engagement with Science: an inclusive approach to innovate in health research with Real-World Data","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-03-10 10:05:48","doi":"10.21203/rs.3.rs-5554797/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-02-18T18:30:52+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-02-17T14:37:28+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"13449040169675565404487747899406385118","date":"2025-02-04T16:24:28+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-02-03T14:03:40+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"308955327868418719244788080863797553668","date":"2025-01-29T16:42:39+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"36834469385922612386080432870044221396","date":"2025-01-28T14:41:15+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-01-13T19:29:42+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-01-10T18:53:48+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-01-10T18:31:30+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Medical Research Methodology","date":"2025-01-10T18:30:25+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"
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