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