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

iKNOW IT：通过信息技术增加儿科肾移植患者的知识

• 批准号: 10440245
• 负责人: Ari Pollack
• 金额: $ 18.84万
• 依托单位: SEATTLE CHILDREN'S HOSPITAL
• 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 2024-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10440245
• 关键词: Access to Information; Acute; Address; Adherence; Adolescent; Anxiety; Caregiver support; Caregivers; Caring; Child; Childhood; Clinical; Clinical Investigator; Clinical Markers; Clinical Trials; Communication; Creatinine; Data; Data Element; Decision Making; Development; Educational workshop; Effectiveness; Elements; End stage renal failure; Ensure; Evaluation; Face; Family; Focus Groups; Fostering; Functional disorder; Future; Goals; Health; Hospitalization; Individual; Information Centers; Information Systems; Information Technology; Interview; Kidney Diseases; Kidney Transplantation; Knowledge; Lead; Life; Longevity; Low Prevalence; Medical; Medical Care Team; Mentors; Methods; Natural History; Nephrology; Normalcy; Observational Study; Outcome; Participant; Patient Outcomes Assessments; Patients; Pharmaceutical Preparations; Physicians; Pilot Projects; Population; Practice Management; Privacy; Process; Public Health Informatics; Qualitative Research; Quality of life; Randomized Controlled Trials; Regimen; Research; Research Methodology; Research Training; Resources; Risk Factors; Sampling; Scientist; Self Management; Surveys; Symptoms; Technology; Training; Training Programs; Transplant Recipients; Transplantation; Uncertainty; Visualization; Work; career development; clinical decision-making; clinically relevant; design; effectiveness evaluation; effectiveness testing; experience; health information technology; improved; improved outcome; innovation; modifiable risk; novel; patient engagement; patient oriented; pediatric patients; peer; post-transplant; preservation; prevent; programs; prospective; prototype; psychosocial; skills; success; support tools; tool; transplantation medicine; usability; user centered design

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.

项目总结/摘要 该提案描述了一个为期五年的研究培训计划，将使波拉克博士实现他的长期- 长期目标是成为一个世界知名的和独立的医生，科学家，致力于发展 并创建设计良好的健康信息技术（HIT），以改善儿童的结果 患有肾病波拉克博士的项目目标是解决未满足的信息需求， 年轻肾移植患者自我管理实践减少和不依从性， 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， 支持患者及其护理人员。使用参与式设计方法，让利益相关者参与到 迭代过程，他的工作将导致创建一个新的原型信息工具，iKNOW IT， 支持年轻的肾移植患者和护理人员。这项建议建立在他的临床训练， 儿科肾病学，临床信息系统的经验，以及他以前在描述 医生的临床决策过程。波拉克博士的研究将得到一位杰出的 一组具有健康信息学、移植医学、以用户为中心的设计和临床 审判管理他的导师致力于确保这个项目和他的职业生涯取得成功 作为一名独立的临床研究者。 该提案的第一个目的是进行一项观察性研究，以确定年轻肾脏患者的信息需求。 移植患者和他们的护理人员。这些项目将首先通过个人 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。他的第二个目标将包括设计研讨会和原型设计的迭代过程， 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。的不同方法 将对临床和经验信息进行评估，以确定最佳设计实践， 支持患者和护理人员的决策。第三个目标是通过一个 对一组年轻肾移植患者及其照顾者的功能技术探讨。集体 这项研究的结果将为使用HIT进行多中心随机对照试验提供信息， 自我管理和减少肾移植患者的非依从性。 通过实现本提案中的目标，波拉克博士将解决我们对如何 利用卫生信息技术满足年轻肾移植患者的信息需求， 家人最终，这一提议将使波拉克博士能够建立一个更大的研究计划， HIT的特点和整合，以改善肾病儿童的临床结局。

项目成果

Creating synthetic patient data to support the design and evaluation of novel health information technology.

创建综合患者数据以支持新型健康信息技术的设计和评估。

• DOI: 10.1016/j.jbi.2019.103201
• 发表时间: 2019
• 期刊: Journal of biomedical informatics
• 影响因子: 4.5
• 作者: Pollack,AriH;Simon,TamaraD;Snyder,Jaime;Pratt,Wanda
• 通讯作者: Pratt,Wanda

My Kidney Identity: Contextualizing pediatric patients and their families kidney transplant journeys.

我的肾脏身份：了解儿科患者及其家人的肾移植之旅。

• DOI: 10.1111/petr.14343
• 发表时间: 2022
• 期刊: Pediatric transplantation
• 影响因子: 1.3
• 作者: Dunbar,JuliaC;Bascom,Emily;Pratt,Wanda;Snyder,Jaime;Smith,JodiM;Pollack,AriH
• 通讯作者: Pollack,AriH

Reflecting on patient-generated photographs of the pediatric renal transplant experience.

• DOI: 10.1111/petr.13896
• 发表时间: 2021-05
• 期刊: Pediatric transplantation
• 影响因子: 1.3
• 作者: Pollack AH;Snyder J
• 通讯作者: Snyder J