促进智力或发育障碍人士的健康政策和成果:社区主导议程》。

IF 9.5 Q1 HEALTH CARE SCIENCES & SERVICES
Hoangmai H Pham, Teal W Benevides, May-Lynn Andresen, Madelyn Bahr, Joanne Nicholson, Tim Corey, Jennifer E Jaremski, Kristen Faughnan, Miriam Edelman, Alexis Hernandez-Hons, Carolyn Langer, Stephen Shore, Karla Ausderau, Helen Burstin, Susan T Hingle, Arethusa S Kirk, Khaliliah Johnson, Vincent Siasoco, Emma Budway, Meelin Dian Chin Kit-Wells, Laura Cifra-Bean, Marco Damiani, Shelby Eisenchenk, Chester Finn, Merrill Friedman, Morénike Giwa Onaiwu, Martha Haythorn, Tracy Jirikowic, Margaret C Lo, Coleen Mackin, Thomas Mangrum, Zanetha Amani Matisse, Steven Merahn, Adam L Myers, Patricia D Nobbie, Julie H Siebert, Michael G Skoch, Ivanova Smith, B J Stasio, Maura K Sullivan, Huan Vuong, Max Wheeler, Tyler G Wigington, Charlotte Woodward
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引用次数: 0

摘要

重要性:美国至少有 1,000 万人患有智力和/或发育障碍 (IDD)。智障人士整体健康状况不佳、慢性病(包括糖尿病)、心理健康挑战、孕产妇死亡率和可预防死亡的发生率要高得多。本特别通报根据社区主导的共识模式提出了国家目标,以促进 IDD 患者及其照顾者/合作伙伴的优先健康成果,并确定了实现这些目标的关键政策机遇和挑战。社区主导的共识议程为集中研究、改善数据收集和质量衡量、提高服务覆盖率和支付能力以及投资于有准备的临床工作人员队伍和基础设施奠定了基础,其方式应与社区成员的生活经验和观点相一致:观察结果:IDD 患者优先考虑的是全面的健康结果以及量身定制的支持和服务,这些都是由个性化的健康目标驱动的,而这些目标会随着他们生命历程的变化而变化。照护者/合作伙伴需要为他们自身的健康提供支持,并能方便地获取资源,以优化他们对患有 IDD 的亲人的支持。培养一支准备充分的临床队伍,为 IDD 患者提供服务,需要国家和地区政策的改变,以激励和组织培训和继续教育。要确保有效和高价值的覆盖、支付和临床决策,就需要投资于新的数据存储库和数据共享基础设施、公共和私人支付方之间的共享学习,以及开发新的技术和工具,以增强 IDD 患者积极参与自身医疗保健的能力:本项目以 IDD 社区成员的观点为中心,确定了协商一致的健康优先事项,这些优先事项也适用于许多其他患者群体。制定医疗信息技术标准的公共和私人支付机构及监管机构有机会促进以个人需求为重点的临床数据收集、强调以人为本目标而非主要是临床指南的质量衡量,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/企业家有机会创新出一支准备更充分的医疗队伍和共享数据基础设施,以支持基于价值的医疗计划。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Advancing Health Policy and Outcomes for People With Intellectual or Developmental Disabilities: A Community-Led Agenda.

Importance: 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.

Observations: 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.

Conclusions and relevance: 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.

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来源期刊
CiteScore
4.00
自引率
7.80%
发文量
0
期刊介绍: JAMA Health Forum is an international, peer-reviewed, online, open access journal that addresses health policy and strategies affecting medicine, health, and health care. The journal publishes original research, evidence-based reports, and opinion about national and global health policy. It covers innovative approaches to health care delivery and health care economics, access, quality, safety, equity, and reform. In addition to publishing articles, JAMA Health Forum also features commentary from health policy leaders on the JAMA Forum. It covers news briefs on major reports released by government agencies, foundations, health policy think tanks, and other policy-focused organizations. JAMA Health Forum is a member of the JAMA Network, which is a consortium of peer-reviewed, general medical and specialty publications. The journal presents curated health policy content from across the JAMA Network, including journals such as JAMA and JAMA Internal Medicine.
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