Improving Health Care Quality through Health IT for Persons with Intellectual Dis

描述（由申请人提供）：智障成年人在接受医疗保健和浏览医疗保健系统方面面临巨大障碍。由此产生的护理连续性差，可导致更高的发病率在ID的人。鉴于其复杂的健康需求和极端分散的护理面临的个人ID，额外的干预是必要的，以改善护理的连续性和健康信息的共享。电子集成个人健康记录（PHR）通过以自动化、以患者为中心的方式与护理人员和提供者共享健康数据，有望帮助重塑医疗保健。然而，目前还没有建立在因特网上的、能够满足这一弱势群体需要的公共卫生报告。为了解决这个问题，我们建议调整和测试现有的PHR，专门满足ID人士的需求。PHR将建立在国际特奥会与HealthOne Global合作正在进行的工作基础上，称为成人智力残疾人个人健康记录，或PHR-ID。研究小组包括PHR-ID的开发人员，质量改进和医学信息学专家，以及卫生服务和干预研究人员。在项目的第一阶段，将举行重点小组会议，以吸收关键的支持群体（例如，卫生保健提供者、护理人员）。这将完善并最终确定为智力残疾人制定的《医生促进人权国际倡议》的内容。在第二阶段，将进行为期4个月的可行性研究，以评估护理人员和医疗保健提供者对PHR-ID的可用性、感知和影响。定性和定量分析将检查的可用性PHR-ID成人ID和他们的初级保健医生的60名照顾者。可行性研究的结果将通过为智力/发育残疾成年人服务的国家和州消费者和提供者组织传播。为ID患者开发个人健康记录有可能帮助提高以与这些人的价值观和优先事项高度一致的方式获得的护理质量。PHR-ID的相对低成本和易于传播将增加对负责ID成人医疗保健的州和地方机构的公共卫生影响。如果可行性研究成功，未来将提交R18申请，涉及多中心随机对照试验，以检查干预对患者激活的影响，护理质量差可能是智力/发育障碍（ID）患者发病率过高的一个重要风险因素。患有ID的成年人及其家人在寻求我们许多人认为理所当然的基本医疗保健方面面临巨大障碍。电子个人健康记录（PHR）有望通过将健康记录的所有权和所在地从分散在多个提供者之间转变为纵向和以患者为中心来帮助重塑医疗保健。为了解决这个问题，我们建议调整和测试现有的PHR，以适应ID人士的需求。PHR将建立在国际特奥会与HealthOne Global正在进行的工作，并在本申请中被称为智障成年人个人健康记录或PHR-ID。

DESCRIPTION (provided by the applicant): Adults with intellectual disabilities (ID) face enormous obstacles in receiving health care and navigating the health care system. The resultant poor continuity of care can lead to greater morbidity in persons with ID. Given their complex health needs and the extreme fragmentation of care faced by individuals with ID, additional intervention is necessary to improve continuity of care and the sharing of health information. Electronic, integrated Personal Health Records (PHRs) hold promise in helping reshape healthcare by sharing health data with their caregivers and providers in an automated, patient-centered fashion. However, there are currently no established Internet-based PHRs available that meet the needs of this vulnerable population. To address this problem, we propose to adapt and test an existing PHR that will specifically meet the needs of persons with ID. The PHR will build upon ongoing work by the Special Olympics International in conjunction with HealthOne Global, known as the Personal Health Record for Adults with Intellectual Disabilities, or PHR- ID. The study team includes the developers of PHR-ID, quality improvement and medical informatics experts, and health services and intervention researchers. During the first phase of the project, focus groups will be conducted to incorporate input from key constituency groups (e.g., health care providers, caregivers). This will refine and finalize the PHR-ID content for persons with intellectual disabilities. During the second phase, a 4-month feasibility study will be conducted to assess the usability, perceptions, and impact of the PHR-ID by caregivers and health care providers. Qualitative and quantitative analyses will examine the usability of the PHR-ID among 60 caregivers of adults with ID and their primary care physicians. Findings from the feasibility study will be disseminated via national and state consumer and provider organizations serving adults with intellectual/ developmental disabilities. Developing a personal health record for people with ID has the potential to help improve the quality of care received in a manner that is highly consistent with these individuals' values and priorities. The relative low cost and ease of dissemination of the PHR-ID will increase the public health impact on state and local agencies responsible for the health care of adults with ID. If the feasibility study is successful, a future R18 application will be submitted involving a multi-center randomized, controlled trial to examine the impact of the intervention on patient activation, provider and system-level management involving care for adults with ID. Poor quality of care may be an important risk factor for excess rates of morbidity in persons with intellectual/developmental disabilities (ID). Adults with ID, and their families, face enormous obstacles in seeking the kind of basic health care that many of us take for granted. Electronic Personal Health Records (PHRs) hold promise in helping reshape health care by shifting the ownership and locus of health records from being scattered across multiple providers to being longitudinal and patient-centered. To address this problem, we propose to adapt and test an existing PHR to fit the needs of persons with ID. The PHR will be built on the ongoing work of Special Olympics International in conjunction with HealthOne Global and is referred to in this application as the Personal Health Record for Adults with Intellectual Disabilities or PHR-ID.