University of Michigan, Department of Emergency Medicine, Ann Arbor, Michigan.
KK Women's and Children's Hospital, Department of Emergency Medicine, Singapore.
West J Emerg Med. 2022 Oct 18;23(6):947-951. doi: 10.5811/westjem.2022.7.56398.
The Emergency Medicine Education and Research by Global Experts (EMERGE) network was formed to generate and translate evidence to improve global emergency care. We share the challenges faced and lessons learned in establishing a global research network.
We describe the challenges encountered when EMERGE proposed the development of a global emergency department (ED) visit registry. The proposed registry was to be a six-month, retrospective, deidentified, minimal dataset of routinely collected variables, such as patient demographics, diagnosis, and disposition.
Obtaining reliable, accurate, and pertinent data from participating EDs is challenging in a global context. Barriers experienced ranged from variable taxonomies, need for language translation, varying site processes for curation and transfer of deidentified data, navigating institution- and country-specific data protection regulations, and substantial variation in each participating institution's research infrastructure including training in research-related activities. We have overcome many of these challenges by creating detailed data-sharing agreements with bilateral regulatory oversight agreements between EMERGE and participating EDs, developing relationships with and training health informaticians at each site to ensure secure transfer of deidentified data, and formalizing an electronic transfer process ensuring data privacy.
We believe that networks like EMERGE are integral to providing the necessary platforms for education, training, and research collaborations for emergency care. We identified substantial challenges in data sharing and variation in local sites' research infrastructure and propose potential approaches to address these challenges.
全球专家紧急医学教育与研究(EMERGE)网络的成立旨在生成和转化证据,以改善全球紧急护理。我们分享了在建立全球研究网络时所面临的挑战和经验教训。
我们描述了 EMERGE 提出开发全球急诊部(ED)就诊登记处时所遇到的挑战。拟议的登记处将是一个为期六个月的、回顾性的、去识别的、最小数据集,包含常规收集的变量,如患者人口统计学、诊断和处置。
在全球范围内,从参与的 ED 获得可靠、准确和相关的数据是具有挑战性的。所经历的障碍包括分类法的变化、需要语言翻译、用于审核和传输去识别数据的站点流程不同、在机构和国家特定的数据保护法规之间进行导航,以及每个参与机构的研究基础设施存在很大差异,包括与研究相关活动的培训。我们通过与 EMERGE 和参与的 ED 之间建立详细的数据共享协议,并与每个站点的健康信息学家建立关系和培训,以确保去识别数据的安全传输,以及正式确定电子传输过程以确保数据隐私,克服了许多这些挑战。
我们认为,像 EMERGE 这样的网络对于提供紧急护理的教育、培训和研究合作所需的平台至关重要。我们在数据共享方面发现了重大挑战,并且在当地站点的研究基础设施方面存在差异,我们提出了潜在的方法来解决这些挑战。