Welcome

Improving the quality of life for End Stage Renal Disease (ESRD) patients is one of the most important goals for The Renal Network (TRN). Research tells us that patients who are knowledgeable about his/her disease and participate in his/her health care have better health outcomes. In addition, patients have told The Renal Network that communicating through other patients is one of the most effective ways to share this knowledge, which is why we created the Network Patient Representative Program (NPRP)!

The NPRP provides an avenue to increase communication among patients, facility staff, and The Renal Network. It can assist in empowering patients with knowledge, increasing their coping skills and quality of life, as well as help facilities to meet some of the patient participation requirements in the Conditions for Coverage (CfC). Ultimately, it will help the Centers for Medicare and Medicaid Services (CMS) better understand patient and facility needs. CMS will look to the Network Patient Representatives (NPR) to provide the patient viewpoint on topics of special interest to both patients and facilities.

TRN has developed the NPRP as a way to listen to and learn from patients and family members. TRN will work with information supplied by the NPR to develop education, resources and best practices needed for patients to live well with kidney disease. This program will build a network of patient volunteers who take responsibility for communicating vital information to other patients as well as passing on patient input to TRN.

Overview
Structure of the Program
Role of the Patient Representative
Role of Staff Coordinator
Role of the Shift Spokesperson
Role of the Facility
How to Apply
Resources

Overview

Improving the quality of life for End Stage Renal Disease (ESRD) patients is one of the most important goals for The Renal Network (TRN). Research tells us that patients who are knowledgeable about his/her disease and participate in his/her health care have better health outcomes. In addition, patients have told The Renal Network that communicating through other patients is one of the most effective ways to share this knowledge, which is why we created the Network Patient Representative Program (NPRP)!

The NPRP provides an avenue to increase communication among patients, facility staff, and The Renal Network. It can assist in empowering patients with knowledge, increasing their coping skills and quality of life, as well as help facilities to meet some of the patient participation requirements in the Conditions for Coverage (CfC). Ultimately, it will help the Centers for Medicare and Medicaid Services (CMS) better understand patient and facility needs. CMS will look to the Network Patient Representatives (NPR) to provide the patient viewpoint on topics of special interest to both patients and facilities.

TRN has developed the NPRP as a way to listen to and learn from patients and family members. TRN will work with information supplied by the NPR to develop education, resources and best practices needed for patients to live well with kidney disease. This program will build a network of patient volunteers who take responsibility for communicating vital information to other patients as well as passing on patient input to TRN.

Structure of the Program

Overall, the program will have two key leads in each dialysis facility, the Network Patient Representative (NPR) and the Facility Staff Coordinator (FSC). In addition, the facility may wish to add Shift Spokespersons to talk with patients who are on different shifts than the NPR. Patient Representatives and Staff Coordinators may include family members or caregivers as spokespersons for patients that may need their help to be part of the program.

The NPR and the FSC, will provide information and resources to patients to help them, their families and caregivers become active in their treatment and advocates in their health care. This will help empower patients with knowledge, enhancing their coping skills and quality of life.

The NPR will work with the FSC to develop a facility-wide communication program with other patients and /or family members, to recruit shift representatives so that patients on all shifts can participate in the communication process.

TRN is striving to promote and achieve network-wide adoption of patient and family engagement best practices through the NPRP within each facility.

Role of the Patient Representative

The Patient Representative will work with the ESRD Network and facility staff coordinator to develop and implement effective patient-centered care approaches and promote patient and family engagement programs in their facility. They will:

Provide the overall voice of the patients at the facility to the Network.

Inform patients about The Renal Network.
Refer patients and family members to the appropriate people when concerns or complaints are shared. Be a role model to other patients through their involvement with their own treatment.
Attend Network-sponsored webinars (preferably together with the Staff Coordinator but can also participate from home access to a computer and internet connection is available).
Work with the ESRD Network and facility staff to implement facility-based activities to promote and engage patients as active members of their own health care team.
Work with facility staff to create a facility-wide patient communication system based on the recruitment of patient spokespersons for each of the shifts at the facility.
Provide the patient voice as a Subject Matter Experts (SME) for the Centers for Medicare and Medicaid Services (CMS) and TRN as requested. SMEs are committed and informed patients who through their unique knowledge and experience as patients are able to provide the patient perspective to the Network’s quality improvement activities and educational campaigns. Patient representatives may be asked to participate in focus groups, meetings and panel discussions which will focus on themes and suggest activities to promote patient and family engagement at the facility level.
Hold general meetings on a regular basis in the facility to familiarize the “shift spokesperson” and other interested persons with facility activities and to gather and document the ideas, needs, concerns and comments of the facility patients and staff.

The Role of Staff Coordinator

To function effectively, the Network Patient Representative Program requires the appointment of a facility staff member to act as Staff Coordinator. The Staff Coordinator will work with the Network Patient Representative to communicate with the facility administration, other departments and the patient shift representatives. They will:

Attend Network-sponsored webinars and encourage active involvement of the Network Patient Representative.
Work with the ESRD Network and Network Patient Representatives to implement facility-based activities to promote and engage patients as active members of their own health care team. Work with Network Patient Representative to create a facility-wide patient communication system based on the recruitment of patient spokespersons for each of the shifts at the facility.
Facilitate participation of the Network Patient Representative when called upon to act as Subject Matter Experts (SMEs) by The Renal Network and/or CMS.
Hold general meetings on a regular basis in the facility to familiarize the “shift spokesperson” and other interested persons with facility activities and to gather and document the ideas, needs, concerns and comments of the facility patients and staff.

Patient representatives and staff coordinators will maintain an active record of their patient and family engagement activities and submit them to the Patient Services Department. This Network Patient Representative Program Activity Report will include the issues and concerns that have been voiced by the other patients in the facility.

The Role of the Shift Spokesperson

Keeping the lines of communication open and moving among a large number of patients spread over several shifts is not an easy task. Depending on the size of your facility, the number of patients in your community and the number of shifts, the patient representative and staff coordinator may decide to recruit additional patients and/or other family members to act as a “shift spokesperson” to assist them in getting the word out or receiving feedback on different shifts. They will:

Stay in touch with patients directly and pass along information and news while gathering and relaying concerns and views on issues, needs and interests from patients on their shift to the patient representative or staff coordinator.

The Role of the Facility

As a leader in our dialysis provider system, your assistance is essential to successfully promote and implement the Network Patient Representative Program. Each facility can add to the roles of the Network Patient Representative and facility Staff Coordinator to enhance the communication process in their facility. Additional staff members and patients will be able to attend the Network-sponsored webinars, but it will be extremely important for the Network Patient Representative and the Facility Staff Coordinator to attend. Family members may also participate as spokespersons for the various shifts as we also want to hear the voice of the family.

Through this program your facility and your patients will have access to free educational webinars, new educational resources, and a direct line of communication to the Network and other program participants. The Facility will:

Identify a patient to act as your Network Patient Representative and a staff member to act as the facility liaison or Staff Coordinator.
Through the efforts of the Network Patient Representative and the Staff Coordinator develop best practices that can be shared with other dialysis units.

How to Apply

As a patient you should contact your facility’s social worker (or FSC if one has been assigned), and inform them that you are interested in becoming a NPR.

OR

A facility administration can speak with its patients and nominate a candidate to serve as the NPR (or shift representative). The candidate must be aware and supportive of his/her nomination.

Qualifications for the Network Patient Representative

Have personal experience with kidney disease including different modalities.
Have the ability to represent the interests of patients.
Have the ability to communicate the perspective of patients.
Have the ability to identify issues that are important to patients.
Have the ability to understand some of the issues affecting kidney patients today such as Quality Incentive Payment (QIP), patient safety issues, patient education needs and knowledge gaps, patient satisfaction (including grievances and ICHAPS.
Ability to share information about his/her experience to the patient community.
Be in adherence to their own treatment plan.
Be able to attend TRN training meetings in person or via webinar or conference call.
Be able to function as a Subject Matter Expert (SME).