Wormeli Consulting, LLC, Ashburn, VA.
California Department of Public Health, Sacramento, CA.
JCO Clin Cancer Inform. 2021 Mar;5:288-294. doi: 10.1200/CCI.20.00177.
For central cancer registries to become a more significant public health resource, they must evolve to capture more timely, accurate, and extensive data. Key stakeholders have called for a faster time to deliver work products, data extensions such as social determinants of health, and more relevant information for cancer control programs at the local level. The proposed model consists of near real-time reporting stages to replace the current time and labor-intensive efforts to populate a complete cancer case abstract on the basis of the 12- and 24-month data submission timelines. The first stage collects a cancer diagnosis minimum data set sufficient to describe population incidence and prevalence, which is then followed by a second stage capturing subsequent case updates and treatment data. A third stage procures targeted information in response to identified research projects' needs. The model also provides for further supplemental reports as may be defined to gather additional data. All stages leverage electronic health records' widespread development and the many emerging standards for data content, including national policies related to healthcare and technical standards for interoperability, such as the Fast Healthcare Interoperability Resources specifications to automate and accelerate reporting to central cancer registries. The emergence of application programming interfaces that allow for more interoperability among systems would be leveraged, leading to more efficient information sharing. Adopting this model will expedite cancer data availability to improve cancer control while supporting data integrity and flexibility in data items. It presents a long-term and feasible solution that addresses the extensive burden and unsustainable manual data collection requirements placed on Certified Tumor Registrars at disease reporting entities nationally.
为了使中央癌症登记处成为更重要的公共卫生资源，它们必须发展以获取更及时、准确和广泛的数据。主要利益相关者呼吁更快地提供工作成果、扩展数据（如健康的社会决定因素）以及为地方一级的癌症控制计划提供更相关的信息。所提出的模型包括近实时报告阶段，以取代目前基于 12 个月和 24 个月数据提交时间表来填充完整癌症病例摘要的耗时费力的工作。第一阶段收集足以描述人群发病率和流行率的癌症诊断最小数据集，然后进入第二阶段，捕获随后的病例更新和治疗数据。第三阶段根据已确定的研究项目的需求获取有针对性的信息。该模型还规定了进一步的补充报告，以收集额外的数据。所有阶段都利用电子健康记录的广泛发展和数据内容的许多新兴标准，包括与医疗保健相关的国家政策和互操作性技术标准，如快速医疗互操作性资源规范，以自动化和加速向中央癌症登记处报告。还将利用允许系统之间进行更多互操作的应用程序编程接口，从而实现更高效的信息共享。采用这种模式将加快癌症数据的可用性，以改善癌症控制，同时支持数据完整性和数据项的灵活性。它提出了一个长期可行的解决方案，解决了在全国疾病报告实体中对认证肿瘤登记员的广泛负担和不可持续的手动数据收集要求。
