PDF(Pubmed)
Abstract：
Health inequalities amplified by the COVID-19 pandemic have disproportionately affected racialized and equity-deserving communities across Canada. In the Municipality of Peel, existing data, while limited, illustrates that individuals from racialized and equity-deserving communities continue to suffer, receive delayed care, and die prematurely. In response to these troubling statistics, grassroots community advocacy has called on health systems leaders in Peel to work with community and non-profit organizations to address the critical data and infrastructure gaps that hinder addressing the social determinants of health in the region. To support these advocacy efforts, we used a community-based participatory research approach to understand how we might build a data collection ecosystem across sectors, alongside community residents and service providers, to accurately capture the data about the social determinants of health. This approach involved developing a community engagement council, defining the problem with the community, mapping what data is actively collected and what is excluded, and understanding experiences of sociodemographic data collection from community members and service providers. Guided by community voices, our study focused on sociodemographic data collection in the primary care context and identified which service providers use and collect these data, how data are used in their work, the facilitators and barriers to data use and collection. Additionally, we gained insight into how sociodemographic data collection could be respectful, safe, and properly governed from the perspectives of community members. From this study, we identify a set of eight recommendations for sociodemographic data collection and highlight limitations. This foundational community-based work will inform future research in establishing data governance in partnership with diverse and equity-deserving communities.
摘要：
COVID-19大流行加剧了健康不平等，不成比例地影响了加拿大各地种族化和公平应得的社区。在皮尔市，现有数据,虽然有限，说明来自种族化和公平应得社区的个人继续受苦，接受延迟护理，过早地死去.针对这些令人不安的统计数据，基层社区倡导呼吁Peel的卫生系统领导人与社区和非营利组织合作，解决阻碍解决该地区健康社会决定因素的关键数据和基础设施差距。为了支持这些宣传工作，我们使用基于社区的参与式研究方法来了解我们如何建立跨部门的数据收集生态系统，与社区居民和服务提供者一起，准确地获取有关健康的社会决定因素的数据。这种方法涉及建立一个社区参与委员会，与社区一起定义问题，映射哪些数据被积极收集，哪些数据被排除，并了解从社区成员和服务提供商收集社会人口统计数据的经验。在社区声音的引导下，我们的研究侧重于初级保健背景下的社会人口统计数据收集，并确定哪些服务提供者使用和收集这些数据，如何在他们的工作中使用数据，数据使用和收集的促进者和障碍。此外,我们深入了解了社会人口统计学数据收集如何受到尊重，安全,并从社区成员的角度进行适当的管理。从这项研究中,我们确定了一套8条社会人口统计学数据收集建议,并强调了局限性.这项基于社区的基础工作将为未来的研究提供信息，以与多元化和公平的社区合作建立数据治理。
