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

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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.