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

在技​​术平台中使用以患者为中心的指南来改善镰状细胞病成人的医疗保健

• 批准号: 10163895
• 负责人: Robert M Cronin
• 金额: $ 18.33万
• 依托单位: OHIO STATE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-06-01 至 2023-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10163895
• 关键词: Academic Medical Centers; Acute; Adherence; Adolescent; Adoption; Adult; Affect; Age; American; Americas; Award; Car Phone; Caring; Child; Childhood; Chronic Disease; Clinic; Clinical; Clinical Sciences; Collaborations; Communities; Development Plans; Disease; Disease Management; Educational Materials; Emergency department visit; Ensure; Expenditure; Family; Feedback; Focus Groups; Foundations; Future; Geography; Goals; Guidelines; Health; Health Expenditures; Health Personnel; Health Technology; Healthcare; Hematological Disease; Hematology; Hemoglobin; Hereditary Disease; Individual; Inherited; Internal Medicine; International; Intervention; Interview; Investigation; K-Series Research Career Programs; Knowledge; Letters; Life; Life Expectancy; Longevity; Measures; Mentors; Mobile Health Application; National Heart, Lung, and Blood Institute; Neighborhoods; Online Systems; Outcome; Paper; Parents; Participant; Patient-Centered Care; Patients; Pattern; Pediatric Hospitals; Physicians; Pilot Projects; Population; Preparation; Principal Investigator; Process; Public Health Informatics; Publishing; Qualitative Methods; Regulation; Research; Research Personnel; Resources; Risk; Schools; Self Efficacy; Sickle Cell; Sickle Cell Anemia; Site; Stroke; Surveys; Technology; Tennessee; Testing; Time; Underserved Population; United States; Update; Visit; Work; acceptability and feasibility; acute care; base; career; career development; cell community; clinical care; design; efficacy evaluation; evidence base; evidence based guidelines; experience; health care availability; health care disparity; health care service utilization; health information technology; improved; interest; medical complication; meetings; member; mobile computing; new technology; patient engagement; patient oriented; preference; programs; recruit; research and development; secondary analysis; secondary outcome; skills; social disadvantage; tool; usability; user centered design

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.

该提案的总体目标是准备主要研究人员（PI）成为独立 研究人员的职业目标是开发健康信息技术（健康IT）以改善疾病 - 镰状细胞疾病（SCD）的特定知识。 SCD是血红蛋白的遗传疾病 这影响了100,000多名美国人，其中大多数人居住在低资源的社区。急性SCD 并发症导致急诊室访问230,000次，急性护理每年15亿美元 支出。先前的研究表明，疾病特异性知识的增加与改善 SCD的临床结果。这是针对改善特定疾病知识的策略是高度重视 SCD的个人的照顾。大量证据描述了教育材料（包括在线）如何 教育计划可用于增加特定疾病的知识。在此提案中，PI将 根据先前证据，开发和评估手机技术干预措施 可以提高SCD特定知识。 PI提案提出了一项职业发展计划，其中包括一个问题 具有国际认可的导师的研究经验，具有SCD，定性方法的专业知识， 消费者健康信息和以用户为中心的设计。 PI为此做了以下操作 应用：（1）范德比尔特大学医学中心的小儿和成人血液学诊所参加； （2） 与田纳西州和美国镰状细胞疾病协会的镰状细胞基金会合作，我们 基于本地和民族社区的组织，从成年人那里获得有关知识差距的成年人的意见 在他们的疾病中，并提供有关技术的反馈； （3）改编的2014年NHLBI指南为患者 - 基于社区的意见为中心，可以理解和可行； （4）开始合作 与辛辛那提儿童医院（Cincinnati Children Hospital）一起，设计 对于患有SCD的人。这项合作的目的是纳入2014年以患者为中心的版本 NHLBI指南进入应用程序。 PI是小儿和内科委员会认证的物理学和 生物医学信息丰富，具有开发和评估全生健康IT应用的专业知识 跨度。该建议描述了一项职业发展计划和研究策略，其中PI将获得新的 以及成为发展和评估健康领域的领导者的完成技能，知识和经验 以患者为中心并以患者为中心的IT应用，以改善SCD中的疾病特定知识。这 具体目的是：（1）针对患有SCD的成年人的MHealth应用程序，适应具有指南的MHealth应用程序； （2）评估 伊曼奇的采用，使用和可用性以及（3）确定疾病特异性的改善 SCD成人的知识。最终，在此Mendored奖中开发的新获得的技能将是 应用于确保更新的SCD管理策略的持续过程 通过患者以患者为中心，以患者为中心，可以通过当前和将来的SCD成年人访问。