Almeida Bethânia de A, Carreiro Roberto P, de Souza Maíra L, Barreto Mauricio L
Centre for Data and Knowledge Integration for Health (CIDACS), Gonçalo Moniz Institute, Oswaldo Cruz Foundation (FIOCRUZ), Salvador, Bahia.
Int J Popul Data Sci. 2024 Mar 13;9(1):2163. doi: 10.23889/ijpds.v9i1.2163. eCollection 2024.
The Centre for Data and Knowledge Integration for Health's (CIDACS) data governance efforts have primarily focused on legal, technical and operational procedures to provide high-quality linked administrative data for investigations on social determinants of health and the impact of social protection policies in low-income and vulnerable populations throughout Brazil. The Centre is moving towards an updated data governance model that incorporates the participation of, and consultation and dialogue with, data stakeholders, including groups covered by our linked data. To this end, this paper presents our procedures and challenges, outlining relevant considerations based on a focused literature review that aims to support the inclusion of societal participation in our revised data governance approach, which should be considered an ongoing process.
健康数据与知识整合中心(CIDACS)的数据治理工作主要集中在法律、技术和操作程序上,旨在提供高质量的关联行政数据,以用于对巴西低收入和弱势群体的健康社会决定因素及社会保护政策影响的调查。该中心正在朝着一种更新的数据治理模式迈进,这种模式纳入了数据利益相关者的参与、咨询和对话,包括我们关联数据所涵盖的群体。为此,本文介绍了我们的程序和挑战,基于一项重点文献综述概述了相关考虑因素,该综述旨在支持将社会参与纳入我们修订后的数据治理方法,而这一过程应被视为一个持续的过程。