Institute for Exceptional Care, Washington, DC.
Institute of Public and Preventive Health, Augusta University, Augusta, Georgia.
JAMA Health Forum. 2024 Aug 2;5(8):e242201. doi: 10.1001/jamahealthforum.2024.2201.
At least 10 million people in the United States have an intellectual and/or developmental disability (IDD). People with IDD experience considerably higher rates of poor overall health, chronic conditions including diabetes, mental health challenges, maternal mortality, and preventable deaths. This Special Communication proposes national goals based on a community-led consensus model that advances priority health outcomes for people with IDD and their caregivers/partners and identifies critical policy opportunities and challenges in achieving these goals. A community-led consensus agenda offers a foundation for focusing research, improving data collection and quality measurement, enhancing coverage and payment for services, and investing in a prepared clinical workforce and infrastructure in ways that align with lived experiences and perspectives of community members.
People with IDD prioritize holistic health outcomes and tailored supports and services, driven by personalized health goals, which shift over their life course. Caregivers/partners need support for their own well-being, and easy access to resources to optimize how they support loved ones with IDD. Development of an adequately prepared clinical workforce to serve people with IDD requires national and regional policy changes that incentivize and structure training and continuing education. Ensuring effective and high-value coverage, payment, and clinical decisions requires investments in new data repositories and data-sharing infrastructure, shared learning across public and private payers, and development of new technologies and tools to empower people with IDD to actively participate in their own health care.
Consensus health priorities identified in this project and centered on IDD community members' perspectives are generalizable to many other patient populations. Public and private payers and regulators setting standards for health information technology have an opportunity to promote clinical data collection that focuses on individuals' needs, quality measurement that emphasizes person-centered goals rather than primarily clinical guidelines, and direct involvement of community members in the design of payment policies. Clinical education leaders, accrediting bodies, and investors/entrepreneurs have an opportunity to innovate a better prepared health care workforce and shared data infrastructure to support value-based care programs.
美国至少有 1000 万人患有智力和/或发育障碍 (IDD)。 IDD 患者整体健康状况较差，慢性病发病率较高，包括糖尿病、心理健康问题、孕产妇死亡率和可预防死亡。本特别通讯基于社区主导的共识模式提出了国家目标，该模式推进了 IDD 患者及其护理人员/伴侣的优先健康结果，并确定了实现这些目标的关键政策机会和挑战。社区主导的共识议程为专注于研究、改善数据收集和质量测量、增强服务的覆盖范围和支付、投资于有准备的临床劳动力和基础设施奠定了基础，这些工作与社区成员的生活经历和观点相一致。
IDD 患者优先考虑整体健康结果和量身定制的支持和服务，这些服务由个性化的健康目标驱动，这些目标在他们的整个生命周期中都会发生变化。护理人员/伴侣需要支持自己的健康，并且可以轻松访问资源，以优化他们如何支持 IDD 患者。为 IDD 患者培养一支准备充分的临床劳动力队伍需要国家和地区政策的改变，以激励和构建培训和继续教育。确保有效和高价值的覆盖、支付和临床决策需要投资于新的数据存储库和数据共享基础设施，在公共和私人支付者之间共享学习，以及开发新的技术和工具，使 IDD 患者能够积极参与自己的医疗保健。
本项目确定的以 IDD 社区成员的观点为中心的共识健康优先事项也适用于许多其他患者群体。制定健康信息技术标准的公共和私人支付者和监管机构有机会促进以个体需求为重点的临床数据收集、强调以人为本的目标而不是主要临床指南的质量衡量标准，以及社区成员直接参与支付政策的设计。临床教育领导者、认证机构和投资者/企业家有机会创新更好的准备医疗保健劳动力和共享数据基础设施，以支持基于价值的护理计划。
