The ESRD Network and a Patient’s Perspective on a Disaster Kidney & Urology Foundation of America NY Hall of Science Queens, NY June 19, 2007

Objectives: Brief overview of ESRD Network Program Brief overview of ESRD Network Program Discuss the purpose, development and progress of the ESRD Network Coalition for Disaster Preparedness Discuss the purpose, development and progress of the ESRD Network Coalition for Disaster Preparedness Discuss the importance of disaster planning from a patient perspective Discuss the importance of disaster planning from a patient perspective

The History The End Stage Renal Disease Network program is a national health insurance program for people with irreversible kidney disease and was established in 1972 The End Stage Renal Disease Network program is a national health insurance program for people with irreversible kidney disease and was established in 1972 In 1978 congress authorized development of network organizations and thirty-two networks were established In 1978 congress authorized development of network organizations and thirty-two networks were established In 1988 CMS awarded 18 contracts to administer the program In 1988 CMS awarded 18 contracts to administer the program IPRO awarded contract July 2006 IPRO awarded contract July 2006

“The Mission of the End Stage Renal Disease Network of New York is to promote Health Care for all ESRD patients that is safe, effective, efficient, patient- centered, timely and equitable.”

Who We Are… General NY state population of 19,254,630 There are currently 23,000 ESRD patients receiving dialysis treatment in NY 254 facilities in NY

How Does the Network Work? Each network is responsible for conducting activities in the following areas : –Task 1 quality improvement –Task 2 community information and resources –Task 3 administration –Task 4 information management

Community Information and Resources Establish a Coalition Establish a Coalition Complaints and Grievances Complaints and Grievances Educational material to patients Educational material to patients Emergency Preparedness Emergency Preparedness

Emergency Preparedness Required to facilitate and assist providers in developing plans for emergencies Required to facilitate and assist providers in developing plans for emergencies In the event of disasters the NW will track availability of services and assist patients in identifying facilities that can provide ESRD treatment In the event of disasters the NW will track availability of services and assist patients in identifying facilities that can provide ESRD treatment Educational material to patients Educational material to patients Development of an internal plan Development of an internal plan

ESRD Network Coalition for Disaster Preparedness Purpose: To collaborate on ensuring safe and efficient care during an emergency To collaborate on ensuring safe and efficient care during an emergency To locally operationalize the work that was done within the national disaster coalition To locally operationalize the work that was done within the national disaster coalition

FACTS More than half of the New York State ESRD population is within the five boroughs

There are 11,491 ESRD patients receiving treatment within the 5 boroughs There are 122 dialysis facilities in the 5 boroughs FACTS

Kickoff Meeting Invited 70 leaders within the renal community Invited 70 leaders within the renal community Coalition building lecture Coalition building lecture Collaborated on the need for an operational plan within the 5 boroughs Collaborated on the need for an operational plan within the 5 boroughs Identified 3 areas that need focus Identified 3 areas that need focus

Subgroups Education Education Surge Capacity and Communication Surge Capacity and Communication Transportation and Communication Transportation and Communication Resource Management, Regulatory Barriers and Database Management Resource Management, Regulatory Barriers and Database Management

Education Focus: Education on all aspects of emergency preparedness for dialysis patients and staff

Surge Capacity and Communication Focus: Develop a communication algorithm for all phases of disaster preparedness

Transportation and Communication Focus: Identify needs of how patients will be transported to and from dialysis in the event of a city-wide disaster Focus: Identify needs of how patients will be transported to and from dialysis in the event of a city-wide disaster

Resource Management, Regulatory Barriers and Database Management Focus: Establish Network contact with OEM and DOH, make assessment of ESRD cache, Develop system-wide database, ensure inter-facility plans, Mutual aid agreements Focus: Establish Network contact with OEM and DOH, make assessment of ESRD cache, Develop system-wide database, ensure inter-facility plans, Mutual aid agreements

Steering Committee Consists of all group leaders Consists of all group leaders ESRD Network Community Outreach Coordinator ESRD Network Community Outreach Coordinator ESRD Network Executive Director ESRD Network Executive Director –Conference calls –Brainstorm on direction of coalition and subgroups

Accomplishments

Education Members developed letter and sent to facility Medical Directors and Administrators on Coalition efforts asking them to engage in staff and patient education Members developed letter and sent to facility Medical Directors and Administrators on Coalition efforts asking them to engage in staff and patient education Similar letter developed for other disciplines to add to the education effort Similar letter developed for other disciplines to add to the education effort Brainstorming on an educational toolkit to be sent to each facility to use for education of staff and patients Brainstorming on an educational toolkit to be sent to each facility to use for education of staff and patients Developing a personalized Patient Emergency Data Sheet Developing a personalized Patient Emergency Data Sheet

Surge Capacity and Communication Developed questions for a questionnaire to be sent to facilities with the following guidelines: Developed questions for a questionnaire to be sent to facilities with the following guidelines: 1.Advanced Preparedness 2.Notified Preparedness 3.During Emergency 4.Post Emergency (Recovery)

Transportation and Communication Identified the main source of transportation of dialysis patients Identified the main source of transportation of dialysis patients Recruited a member of the newly formed New York Ambulette Coalition Recruited a member of the newly formed New York Ambulette Coalition

Resource Management, Regulatory Barriers and Database Management Resource Management, Regulatory Barriers and Database Management Critical Asset Survey Tool Critical Asset Survey Tool Medical Reserve Corps contacts Medical Reserve Corps contacts Initiated Vendor Contacts Initiated Vendor Contacts Initiated Resource Identification/Grant Money Initiated Resource Identification/Grant Money Patient “To Go Bags” Identify different levels of disaster i.e. Level I, II, III –Facility –Borough –City

Next Steps Continue efforts to create awareness and solicit assistance from other groups Continue efforts to create awareness and solicit assistance from other groups Meet with all groups in September at IPRO headquarters to continue development of disaster preparedness plan Meet with all groups in September at IPRO headquarters to continue development of disaster preparedness plan

Patient Perspective How important is it to plan ahead?

There are many feelings involved with being dependent on life sustaining treatment Not being in control of own life Fear of getting worse Death

One of the greatest fears may be not being able to receive the treatment needed

Patients depend on professionals To provide direction To give support To be prepared To take care of them

Teamwork, Collaboration and Cooperation is key

Thank You