Using Patient-Centered Guidelines in a Technology Platform to Improve Health Care in Adults with Sickle Cell Disease

这项提议的总体目标是使首席调查员(PI)准备成为一名独立的 研究人员，其职业目标是开发健康信息技术(Health IT)以改善疾病- 具有镰状细胞病(SCD)患者的专门知识。SCD是一种遗传性的血红蛋白疾病 这影响了超过10万美国人，其中大多数人生活在资源匮乏的社区。急性SCD 并发症导致每年急诊科就诊23万人次，急性护理费用15亿美元 支出。先前的研究表明，增加对疾病的特定知识与改善 SCD的临床结局。因此，制定有针对性的战略，以提高对疾病的具体认识，是 SCD患者的护理。重要的证据描述了教育材料，包括在线材料 教育项目，可以用来增加针对疾病的知识。在这项提案中，私人投资公司将 根据技术的先验证据开发和评估移动电话技术干预 可以提高SCD的特定知识。PI提出了一项职业发展计划，其中包括一名被指导的 与具有SCD专业知识的国际知名导师、定性方法、 消费者健康信息学，以用户为中心的设计。国际和平研究所为此做了以下准备工作 申请：(1)到范德比尔特大学医学中心的儿童和成人血液学诊所就诊；(2) 与田纳西州镰刀细胞基金会和美国镰刀细胞疾病协会合作，我们的 以地方和国家社区为基础的组织，从患有SCD的成年人那里获得关于知识差距的信息 在他们的疾病中提供反馈；(3)修改2014年NHLBI指南，使其成为患者- 基于社区的意见，集中、可理解、可操作；以及(4)发起协作 与辛辛那提儿童医院合作，iManage的开发者设计了移动健康应用程序(MHealth App) 适用于患有SCD的个人。这次合作的目标是整合2014年以患者为中心的版本 NHLBI指南添加到应用程序中。私家医生是儿科和内科委员会认证的医生， 生物医学信息学家，具有开发和评估整个生活中的卫生IT应用程序的专业知识 跨度。该提案描述了职业发展计划和研究战略，在该战略中，PI将获得新的 和互补的技能、知识和经验，成为开发和评估健康的领导者 IT应用以患者为中心，以患者为主导，提高SCD的疾病特异性知识。这个 具体目标是：(1)为患有SCD的成年人调整iManage，这是一款带有指南的mHealth应用程序；以及(2)评估 IManage的采用、使用和可用性，以及(3)决定特定疾病的改善 成人SCD患者的知识水平。最终，在这个指导奖中新获得的技能将是 适用于确保SCD管理的最新循证战略的持续进程 将以患者为导向，以患者为中心，并通过当前和未来的技术为SCD成人提供服务。

The overall goal of this proposal is to prepare the principal investigator (PI) to become an independent investigator with the career goal of developing health information technologies (Health IT) to improve disease- specific knowledge in individuals with sickle cell disease (SCD). SCD is an inherited disorder of hemoglobin that affects over 100,000 Americans, most of whom live in low-resourced neighborhoods. Acute SCD complications result in 230,000 emergency department visits and $1.5 billion annually in acute-care expenditures. Prior research indicates that increased disease-specific knowledge correlates with improved clinical outcomes in SCD. Thus, targeting strategies to improve disease-specific knowledge is a high priority in the care of individuals with SCD. Significant evidence describes how educational materials, including online educational programs, can be used to increase disease-specific knowledge. In this proposal, the PI will develop and evaluate a mobile phone technology intervention based on the prior evidence that technologies can improve SCD-specific knowledge. The PI proposes a career development plan that includes a mentored research experience with internationally recognized mentors with expertise in SCD, qualitative methods, consumer health informatics, and user-centered design. The PI has done the following in preparation for this application: (1) attended pediatric and adult hematology clinics at the Vanderbilt University Medical Center; (2) partnered with the Sickle Cell Foundation of Tennessee and Sickle Cell Disease Association of America, our local and national community based organizations to obtain input from adults with SCD about knowledge gaps in their disease and to provide feedback about technology; (3) adapted 2014 NHLBI guidelines to be patient- centered, understandable, and actionable based on input from the community; and (4) initiated a collaboration with Cincinnati Children’s Hospital, developers of iManage, a mobile health application (mHealth app) designed for individuals with SCD. The goal of this collaboration is incorporating the patient-centered version of the 2014 NHLBI guidelines into the app. The PI is a pediatric and internal medicine board certified physician and biomedical informatician, with expertise in developing and evaluating Health IT applications across the life span. This proposal describes a career development plan and research strategy in which the PI will gain new and complementary skills, knowledge, and experience to become a leader in developing and evaluating Health IT applications to be patient-centered and patient-driven to improve disease-specific knowledge in SCD. The specific aims are to: (1) adapt iManage, an mHealth app with guidelines, for adults with SCD; and (2) evaluate the adoption, usage, and usability of iManage, and (3) determine the improvement in disease-specific knowledge in adults with SCD. Ultimately, the newly acquired skills developed in this mentored award will be applied to the continuous process of ensuring that updated evidence-based strategies for SCD management will be patient-driven, patient-centered, and accessible via current and future technologies for adults with SCD.