The ESRD Network and a The ESRD Network and a Patient’s Perspective on a DisasterPatient’s Perspective on a Disaster
Kidney & Urology Foundation of AmericaKidney & Urology Foundation of America
NY Hall of ScienceNY Hall of Science
Queens, NYQueens, NYJune 19, 2007June 19, 2007
Objectives:Objectives: Brief overview of ESRD Brief overview of ESRD
Network ProgramNetwork Program
Discuss the purpose, Discuss the purpose, development and progress of the development and progress of the ESRD Network Coalition for ESRD Network Coalition for Disaster PreparednessDisaster Preparedness
Discuss the importance of Discuss the importance of disaster planning from a patient disaster planning from a patient perspectiveperspective
The HistoryThe History
The End Stage Renal Disease Network program is a The End Stage Renal Disease Network program is a national health insurance program for people with national health insurance program for people with irreversible kidney disease and was established in irreversible kidney disease and was established in 19721972
In 1978 congress authorized development of network In 1978 congress authorized development of network organizations and thirty-two networks were organizations and thirty-two networks were established established
In 1988 CMS awarded 18 contracts to administer the In 1988 CMS awarded 18 contracts to administer the programprogram
IPRO awarded contract July 2006IPRO awarded contract July 2006
““The Mission of the End Stage The Mission of the End Stage Renal Disease Network of New Renal Disease Network of New York is to promote Health Care for York is to promote Health Care for all ESRD patients that is safe, all ESRD patients that is safe, effective, efficient, patient- effective, efficient, patient- centered, timely and equitable.centered, timely and equitable.””
Who We AreWho We Are……
General NY state General NY state population of population of 19,254,63019,254,630
There are currently There are currently 23,000 ESRD patients 23,000 ESRD patients receiving dialysis receiving dialysis treatment in NYtreatment in NY
254 facilities in NY254 facilities in NY
How Does the Network Work?How Does the Network Work?
Each network is responsible for Each network is responsible for conducting activities in the conducting activities in the following areas : following areas : – Task 1 quality improvementTask 1 quality improvement– Task 2 community Task 2 community
information and resourcesinformation and resources– Task 3 administrationTask 3 administration– Task 4 information Task 4 information
management management
Community Information and Community Information and ResourcesResources
Establish a CoalitionEstablish a Coalition Complaints and Complaints and
GrievancesGrievances Educational material to Educational material to
patientspatients Emergency Emergency
PreparednessPreparedness
Emergency PreparednessEmergency Preparedness
Required to facilitate and assist providers in Required to facilitate and assist providers in developing plans for emergenciesdeveloping plans for emergencies
In the event of disasters the NW will track In the event of disasters the NW will track availability of services and assist patients in availability of services and assist patients in identifying facilities that can provide ESRD identifying facilities that can provide ESRD treatmenttreatment
Educational material to patientsEducational material to patients Development of an internal planDevelopment of an internal plan
ESRD Network Coalition for ESRD Network Coalition for Disaster PreparednessDisaster Preparedness
Purpose:Purpose:
To collaborate on ensuring safe and To collaborate on ensuring safe and efficient care during an emergency efficient care during an emergency
To locally operationalize the work that was To locally operationalize the work that was done within the national disaster coalitiondone within the national disaster coalition
FACTSFACTS
More than half of the New More than half of the New York State ESRD population York State ESRD population is within the five boroughsis within the five boroughs
There are 11,491 ESRD patients There are 11,491 ESRD patients receiving treatment within the 5 receiving treatment within the 5
boroughsboroughsThere are 122 dialysis facilities in There are 122 dialysis facilities in
the 5 boroughsthe 5 boroughs
FACTSFACTS
Kickoff MeetingKickoff Meeting
Invited 70 leaders within the renal Invited 70 leaders within the renal communitycommunity
Coalition building lecture Coalition building lecture Collaborated on the need for an operational Collaborated on the need for an operational
plan within the 5 boroughsplan within the 5 boroughs Identified 3 areas that need focusIdentified 3 areas that need focus
SubgroupsSubgroups
EducationEducation Surge Capacity and CommunicationSurge Capacity and Communication Transportation and CommunicationTransportation and Communication Resource Management, Regulatory Barriers Resource Management, Regulatory Barriers
and Database Managementand Database Management
EducationEducation
Focus: Education on all aspects of Focus: Education on all aspects of emergency preparedness for dialysis emergency preparedness for dialysis
patients and staffpatients and staff
Surge Capacity and Surge Capacity and CommunicationCommunication
Focus: Develop a communication algorithm Focus: Develop a communication algorithm for all phases of disaster preparednessfor all phases of disaster preparedness
Transportation and Transportation and CommunicationCommunication
Focus: Identify needs of how patients will Focus: Identify needs of how patients will be transported to and from dialysis in the be transported to and from dialysis in the event of a city-wide disasterevent of a city-wide disaster
Resource Management, Resource Management, Regulatory Barriers and Database Regulatory Barriers and Database
ManagementManagement
Focus: Focus: Establish Network contact with Establish Network contact with OEM and DOH, make assessment of ESRD OEM and DOH, make assessment of ESRD cache, Develop system-wide database, cache, Develop system-wide database, ensure inter-facility plans, Mutual aid ensure inter-facility plans, Mutual aid agreementsagreements
Steering CommitteeSteering Committee
Consists of all group leadersConsists of all group leaders ESRD Network Community Outreach ESRD Network Community Outreach
CoordinatorCoordinator ESRD Network Executive DirectorESRD Network Executive Director
– Conference calls Conference calls – Brainstorm on direction of coalition and Brainstorm on direction of coalition and
subgroupssubgroups
AccomplishmentsAccomplishments
Education Education Members developed letter and sent to facility Members developed letter and sent to facility
Medical Directors and Administrators on Medical Directors and Administrators on Coalition efforts asking them to engage in staff Coalition efforts asking them to engage in staff and patient educationand patient education
Similar letter developed for other disciplines to Similar letter developed for other disciplines to add to the education effortadd to the education effort
Brainstorming on an educational toolkit to be sent Brainstorming on an educational toolkit to be sent to each facility to use for education of staff and to each facility to use for education of staff and patientspatients
Developing a personalized Patient Emergency Developing a personalized Patient Emergency Data SheetData Sheet
Surge Capacity and Surge Capacity and CommunicationCommunication
Developed questions for a questionnaire Developed questions for a questionnaire to be sent to facilities with the following to be sent to facilities with the following guidelines:guidelines:
1.1. Advanced PreparednessAdvanced Preparedness
2.2. Notified PreparednessNotified Preparedness
3.3. During EmergencyDuring Emergency
4.4. Post Emergency (Recovery)Post Emergency (Recovery)
Transportation and Transportation and CommunicationCommunication
Identified the main source of transportation Identified the main source of transportation of dialysis patientsof dialysis patients
Recruited a member of the newly formed Recruited a member of the newly formed New York Ambulette Coalition New York Ambulette Coalition
Resource Management, Regulatory Resource Management, Regulatory Barriers and Database ManagementBarriers and Database Management
Critical Asset Survey Critical Asset Survey Tool Tool
Medical Reserve Medical Reserve Corps contactsCorps contacts
Initiated Vendor Initiated Vendor ContactsContacts
Initiated Resource Initiated Resource Identification/Grant Identification/Grant Money Money
Patient “To Go Bags” Patient “To Go Bags” Identify different Identify different
levels of disaster levels of disaster i.e. Level I, II, IIIi.e. Level I, II, III
– FacilityFacility– BoroughBorough– CityCity
Next StepsNext Steps
Continue efforts to create awareness and Continue efforts to create awareness and solicit assistance from other groups solicit assistance from other groups
Meet with all groups in September at IPRO Meet with all groups in September at IPRO headquarters to continue development of headquarters to continue development of disaster preparedness plandisaster preparedness plan
Patient PerspectivePatient Perspective
How important is it to plan How important is it to plan ahead?ahead?
There are many feelings involved with There are many feelings involved with being dependent on life sustaining being dependent on life sustaining
treatmenttreatment
Not being in control of Not being in control of own lifeown life
Fear of getting worseFear of getting worse DeathDeath
One of the greatest fears may be One of the greatest fears may be notnot being able to receive the being able to receive the
treatment neededtreatment needed
Patients depend on professionals Patients depend on professionals
To provide directionTo provide direction
To give supportTo give support
To be preparedTo be prepared
To take care of themTo take care of them
Teamwork, Collaboration and Cooperation is key
Thank You
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