Gloria L. Krahn, Oregon State University; Susan M. Havercamp, Nisonger Center, Ohio State University; and Alexandra Bonardi, Human Services Research Institute.
Intellect Dev Disabil. 2024 Dec 1;62(6):433-445. doi: 10.1352/1934-9556-62.6.433.
Population level data on health of people with intellectual and developmental disabilities (IDD) are sorely needed to identify their health status, health disparities, and health needs. Key considerations to inform programs and policies need to address prevalence, problem identification, and progress assessment. Recent advances have been made in health data about people with disabilities generally that identify strategies for improving health data for people with IDD, including critical need for a standardized operational definition and survey identifiers of IDD. Past and current actions by federal agencies' to improve health data for health equity are summarized. Emerging developments in IDD health data are identified, including increasing use of self-report, data linking and harmonizing, intersectionality, and recognition of ableism.
人口水平的数据对于了解智障和发育障碍（IDD）人群的健康状况、健康差距和健康需求至关重要。为了制定相关项目和政策，需要考虑到患病率、问题识别和进展评估等关键因素。最近，关于残疾人群的健康数据已经取得了一些进展，这些进展确定了改善 IDD 人群健康数据的策略，包括对标准化操作定义和 IDD 调查标识符的迫切需求。总结了联邦机构为促进健康公平而改善健康数据的过去和当前行动。还确定了 IDD 健康数据中的新兴发展，包括越来越多地使用自我报告、数据链接和协调、交叉性以及对能力主义的认识。
