HPP-Supported App Now Provides Lifesaving Resources to Individuals with End Stage Renal Disease in 13 States
South Carolina
September 2022
Impact
The South Carolina Lowcountry Healthcare Coalition (LCHCC) partnered with the non-profit organization Island Peer Review Organization (IPRO) and members of its Dialysis Work Group to use Hospital Preparedness Program (HPP) funding to develop an app that connects individuals with End Stage Renal Disease (ESRD) and their caregivers to information and resources that can help them find treatment before, during, and after a disaster. When patients receive treatment, they are less likely to need hospitalization.
The ESRD Emergency Hub app was created with the input of ESRD patients and their caregivers, and their unique and valuable perspectives were reflected in its design and capabilities. The LCHCC drew upon its vast partner network, including health care entities, emergency management, and kidney centers, to develop the app. By providing critical information to individuals with ESRD and their caregivers before, during, and after disasters, the app has the potential to reduce the need for them to seek care at hospitals, which could help alleviate some of the surge hospitals typically face during disasters.
“This collection of resources and tools created by emergency management and kidney care
experts will allow people to feel safer knowing they have the knowledge to combat an emergency
event. Without access to these resources, people with compromised kidney function may suffer illness
or even death.1 ”
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Danielle Daley,
Executive Director, IPRO ESRD Network of the South Atlantic
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Since its launch in September 2022, the ESRD Emergency Hub app has been downloaded over 1,000 times and has issued 49 notifications to users about disasters including floods, extreme winter weather, hurricanes, tropical storms, heat advisories, air quality alerts, snowstorms, and tornados. As of August 2023, the app now serves 12 states in addition to South Carolina, ensuring both individuals with ESRD and their caregivers have near-immediate updates, resources, and information when normal care is disrupted.
Background
During a disaster, transportation services for home health and dialysis patients are often suspended, leaving many without access to the lifesaving care, including dialysis treatments or medication that they require. As a result, individuals with ESRD often turn to hospitals in search of care during a disaster, putting additional stress on both hospital staff and resources.
This was the case in South Carolina’s Lowcountry, a coastal area that is impacted by hurricanes almost every year. After seeing a gap in critical care for many individuals in the area, the LCHCC partnered with IPRO, a non-profit that manages four federally funded ESRD Networks across the US, to use HPP funding to develop the ESRD Emergency Hub app. The app is free and sends alerts to connect individuals with ESRD and their caregivers to relevant information and resources specific to a given emergency or disaster, helping them find treatment when normal services are interrupted. The development team worked closely with LCHCC’s Dialysis Work Group, which included representatives from several nationwide dialysis care clinics, acute care hospitals, and state emergency management officials, to develop a comprehensive and patient-centered emergency response notification application for individuals with ESRD.
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“Under no circumstances would we even know each other if we were not active members of the
coalition. HPP is what brought us all together.”
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Diane Fox,
Lowcountry Healthcare Coalition Coordinator,
South Carolina Department of Health and Environmental Control,
Lowcountry Office of Public Health Preparedness
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In addition to working with their Dialysis Working Group partners, the team worked with dialysis patients throughout the app’s development and testing phases to gain additional insight into their experiences finding care during disasters. The app officially launched in September 2022.
Response:
When services are interrupted during an emergency event, it is critical that patients and their caregivers maintain access to a dialysis clinic. The ESRD Emergency Hub App alerts users before anticipated disasters and during subsequent interruptions in care by notifying them of nearby operational dialysis facilities and outlining the resources needed in the event that care is delayed. Leveraging information users provide upon registration, the app’s alerts are geographically targeted. If patients are unable to receive dialysis treatment, the app also provides tools such as a “three-day emergency diet plan” to help sustain an individual’s vitals until they can reach care. Overall, the app focuses on continuity of care for dialysis patients by helping them navigate where to go and what to do, before, during, and after an emergency. As an added convenience, through the app, patients can even track their dialysis center’s information, as well as input and track their prescriptions.
The app works in conjunction with an online blog managed by IPRO where emergency notifications and information are published. As of August 2023, the app is available to patients in 13 states (Maine, Massachusetts, Vermont, New Hampshire, Connecticut, Rhode Island, New York, Ohio, Kentucky, Indiana, North Carolina, Georgia, and South Carolina).
For more information on the ESRD Emergency Hub App, check out the ESRD webpage which includes more details on the app including how to download it.
1. “Emergency Hub App Helps Those with Kidney Disease Stay Healthy During Hurricane Ian.” IPRO, October 14, 2022.
