EN 
ES 
Chia-Shi Wang, MD, MSc
CureGN Pilot Project Grant Awardee
Chia-shi Wang, MD, MSc is a pediatric nephrologist in Atlanta, Georgia. Her passion to improve the lives of patients with nephrotic syndrome began in medical school and led her to become a nephrologist and clinician-scientist focused on nephrotic syndrome research. Dr. Wang’s research has included projects examining nephrotic syndrome risk factors, outcomes, and medication treatments. She has been a CureGN and NEPTUNE investigator since 2015. Working directly with patients and their families in the clinical setting, she learned first-hand that families face heavy management burden. Yet, there are few tools to support families in this chronic disease.
Atlanta, GA
Emory University
Lay Summary of the Project:
Description: Electronic health tools (eHealth), such as text-messaging programs, mobile apps, or webpages and web apps may help improve the care of patients with glomerulonephritis. We previously found that text messaging and mobile apps work well to help track symptoms and disease activity and are liked by pediatric patients and their families. In this project, we will study how well the text-messaging program used among adult CureGN participants improves glomerulonephritis management. We will then partner with patients, nephrologists, health education experts, and engineers to design a comprehensive eHealth tool that is tailored to the specific needs of glomerulonephritis patients.
In the first part of the study, we will use CureGN data to find out how feasible it is for patients to use text-messaging for disease monitoring; how well the program tracks disease activity; whether it helps patients with taking medications; and whether it helps prevent hospitalizations. For the second part of the study to design a comprehensive eHealth tool, we will interview physicians in the CureGN network as well as patients at the University of Michigan and Emory University. We will ask them for their opinions on what features they would like to have in an eHealth tool to help with glomerulonephritis management. Based on the survey results, health education experts and engineers at Emory and Georgia Institute of Technology will built mock-ups of the tool. We will then invite 10 patients to join nephrologists, health education experts, and engineers in stakeholder meetings to review the mock-ups and refine the tool design with the collaborative input of all stakeholders.
Goals and Significance: Our team’s long-term goal is to develop robust, effective, user-centered eHealth tools to improve glomerulonephritis management and patient outcomes. We will capitalize on the incredibly rich data collected from CureGN patients and the expert opinions of CureGN clinicians to glean insights into glomerulonephritis management needs. We will bring together patients, clinicians, and experts in equal partnership to create a tool that directly addresses the needs of patients. In doing so, the tool will have the features and quality that users want and be feasible to use in the real world. We hope to lead to a paradigm change of usual care and improve patient outcomes.
