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

本提案的总体目标是使主要研究者（PI）成为独立的 研究者的职业目标是开发健康信息技术（健康IT），以改善疾病- 镰状细胞病（SCD）患者的具体知识。SCD是一种遗传性血红蛋白紊乱 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230，000次急诊就诊和每年15亿美元的急诊护理 支出。先前的研究表明，增加疾病特异性知识与改善 SCD的临床结局。因此，提高疾病特异性知识的针对性战略是一个高度优先事项， 对SCD患者的护理有大量证据表明，包括在线在内的教育材料 教育计划，可以用来增加疾病的具体知识。在本提案中，PI将 根据先前的证据，制定和评估移动的电话技术干预措施， 可以提高SCD的具体知识。PI提出了一个职业发展计划，其中包括一个辅导 与国际公认的导师在SCD，定性方法， 消费者健康信息学和以用户为中心的设计。PI为此做了以下准备 应用：（1）参加了范德比尔特大学医学中心的儿科和成人血液学诊所;（2） 与田纳西州镰状细胞基金会和美国镰状细胞疾病协会合作，我们的 地方和国家社区组织从成人SCD患者那里获得关于知识差距的信息 在他们的疾病，并提供有关技术的反馈;（3）适应2014年NHLBI指南是病人- 基于社区的输入，以中心为中心，可理解，可操作;（4）发起合作 与辛辛那提儿童医院合作，开发了iManage，这是一款移动的健康应用程序（mHealth应用程序）， 对于患有SCD的人。此次合作的目标是将2014年以患者为中心的 PI是儿科和内科委员会认证的医生， 生物医学信息学家，在开发和评估整个生命健康IT应用方面拥有专业知识 跨度。该提案描述了职业发展计划和研究战略，其中PI将获得新的 和互补的技能，知识和经验，成为发展和评估健康的领导者 IT应用以患者为中心，以患者为驱动，以提高SCD中的疾病特异性知识。的 具体目标是：（1）调整iManage，一个带有指南的移动健康应用程序，用于患有SCD的成年人;以及（2）评估 iManage的采用、使用和可用性，以及（3）确定疾病特异性 成人SCD知识。最终，在这个指导奖中开发的新技能将 应用于确保SCD管理的最新循证策略 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成人SCD患者提供服务。

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.