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.
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.
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:
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:
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:
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:
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.
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.