iKNOW IT: Increasing Knowledge in Pediatric Kidney Transplant Patients through Information Technology

项目摘要/摘要 这份提案描述了一项为期五年的研究培训计划，该计划将使波拉克博士实现他的长期- 任期目标：成为享誉世界的独立内科医生-科学家，致力于发展 以及创建精心设计的健康信息技术(HIT)，以改善儿童的结果 患有肾脏疾病的人。波拉克博士的项目目标是解决未满足的信息需求，这些需求导致 年轻肾移植患者的自我管理做法和不依从性减少 照顾者。他将通过检查一个新的HIT工具的内容和设计要求来实现这一目标 支持病人及其照顾者。使用参与式设计方法，让利益相关者参与 在迭代过程中，他的工作将导致创建一个新的原型信息工具IKnow IT，该工具 支持年轻的肾移植患者和照顾者。这项建议是在他的临床培训基础上提出的 儿科肾病，临床信息系统的经验，以及他以前的研究，描述了 医生的临床决策过程。波拉克博士的研究将得到一个杰出的 具有健康信息学、移植医学、以用户为中心的设计和临床专业知识的导师团队 试验管理。他的导师致力于确保这个项目和他的职业生涯的成功 发展成为独立的临床研究人员。 这项建议的第一个目标是进行一项观察性研究，以确定年轻肾脏的信息需求。 移植病人和他们的照顾者。这些项目将首先通过个人识别和探索 访谈和焦点小组，然后通过开发和管理在更大的人群中进行验证 一项调查的结果。他的第二个目标将包括设计研讨会和原型的迭代过程，其中 患者、护理人员和临床医生将积极参与IKnow IT原型的开发， 鼓励自我管理，支持决策，减少不确定性。不同的方法 将对提供的临床和经验信息进行评估，以确定以下最佳设计实践 支持患者和护理人员的决策。第三个目标将通过一个 功能技术在一组年轻肾移植患者及其照顾者中的应用。集体 这项研究的结果将为使用HIT支持的多中心随机对照试验的发展提供参考 自我管理和减少肾移植患者的不依从性。 通过实现本提案中的目标，波拉克博士将解决我们对如何 利用健康信息技术满足年轻肾移植患者的信息需求和 他们的家人。最终，这项提议将允许波拉克博士建立一个更大的研究计划来研究 HIT的特点和集成，以改善肾病儿童的临床预后。

PROJECT SUMMARY/ABSTRACT This proposal describes a five-year research training program that will allow Dr. Pollack to achieve his long- term goal of becoming a world renowned and independent physician-scientist dedicated to the development and creation of well-designed health information technology (HIT) that improves the outcomes for children living with a kidney disease. Dr. Pollack’s project goal is to address the unmet information needs that result in decreased self-management practices and non-adherence in young kidney transplant patients and their caregivers. He will achieve this goal by examining the content and design requirements of a new HIT tool to support patients and their caregivers. Using a participatory design approach that engages stakeholders in an iterative process, his work will result in the creation of a new prototype information tool, iKNOW IT, that supports young kidney transplant patients and caregivers. This proposal builds upon his clinical training in pediatric nephrology, experience in clinical information systems, and his previous research in describing the clinical decision making process of physicians. Dr. Pollack’s research will be supported by an outstanding group of mentors with expertise in health informatics, transplant medicine, user-centered design, and clinical trial management. His mentors are dedicated to ensuring the success of this project and his career development as an independent clinical investigator. The first aim of this proposal involves an observational study to identify the information needs of young kidney transplant patients and their caregivers. These items will first be identified and explored through individual interviews and focus groups and then validated in a larger population via the development and administration of a survey. His second aim will consist of an iterative process of design workshops and prototyping, where patients, caregivers, and clinicians will actively contribute to the development of the iKNOW IT prototype that encourages self-management, supports decision making, and reduces uncertainty. Different methods of presenting clinical and experiential information will be evaluated to identify the best design practices that support decision making in patients and caregivers. The third aim will pilot the iKNOW IT prototype through a functional technology probe in a group of young kidney transplant patients and their caregivers. The collective results of this study will inform the development of a multicenter, randomized control trial using HIT to support self-management and reduce non-adherence in kidney transplant patients. By accomplishing the aims in this proposal, Dr. Pollack will address critical gaps in our understanding of how to leverage health information technology to meet the information needs of young kidney transplant patients and their families. Ultimately, this proposal will allow Dr. Pollack to build a larger research program to investigate the features and integration of HIT to improve clinical outcomes for children living with kidney disease.