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Patient Representation

Patient Involvement

Patient Advisory Council

Membership

At a minimum, the PAC consists of at least 15 patient members, and one individual must be a family member or caregiver directly related to an ESRD patient. In addition to patients and caregivers, there are also facility staff on the committee. Membership reflects the Network service area and various treatment modalities.

Click here to watch the Network 8 Patient Advisory Council video.

Purpose

The purpose of the PAC is to serve as a voice for kidney patients throughout Network 8. The committee is goal and task oriented. The PAC assists with developing Quality Improvement Activities (QIAs) and educational materials that promote patient centered care and patient engagement. These members provide feedback to the Network and CMS, as Subject Matter Experts (SMEs). They participate in various Learning and Action Networks (LANs) to identify patient needs at a national level and help disseminate information to patients at a local level. Click here to read about the role of the PAC.

Click here for the PAC recruitment flyer.

Click here for the PAC application form.

Goals

  • Identify the needs of renal patients
  • Provide input into the development of QIAs
  • Assist with the development of patient and staff educational materials

Expectations

  • Regularly attend scheduled meetings, at least twice yearly (3-4 telephone conferences and potentially one face to face)
  • Participate in CMS meetings and monthly calls
  • At least 6 members actively participate in the National Patient and Family Engagement LAN
  • Provide a patient perspective to assist with other Network projects as needed

Term

  • Members serve for two years with an opportunity for an extension

Facility Patient Representatives (FPR)

Each facility is asked to name one patient to serve as an FPR.

FPRs may be asked to:

  • Participate in patient focus groups for Network 8
  • Act as a mentor to other patients
  • Introduce patients to Network activities and publications
  • Help patients understand their rights and responsibilities
  • Help distribute the patient newsletter
  • Suggest topics for patient meetings
The Network provides Patient Representatives with material from the Patient Advisory Committee, as well as other educational materials. Patient Representatives may be asked to distribute that information to the other patients in the facility.  Click here for the FPR Handbook.
 
Patient Engagement Resources:

Board of Directors (BOD)

The BOD is the policy-making arm of the Network, and two patients serve up to six years on this board. The BOD meets in-person twice yearly and meets twice yearly by conference call. Patient members of the BOD are automatically members of the PAC. Nominations for vacancies on the BOD are received from Network Council Facility Representatives and from current members of the BOD. Self-nominations are accepted.

Medical Review Board (MRB)

The MRB provides guidance to staff members on QI activities and monitors facilities for specific quality measures. The MRB meets in-person twice yearly by conference call. The two patient members of the MRB are automatically members of the PAC. Nominations for vacancies on the MRB are received from Network Council Facility Representatives and from current members of the MRB.

There are two ways of becoming a PAC member.  Patient members of the Board of Directors and Medical Review Board serve on the PAC by virtue of being on those committees.  Others are recruited annually by contacting at least 25% of the dialysis facilities for recommendations of patient volunteers. Committee members can self-nominate, and self-nominations must include a letter of recommendation from a renal professional. Nominated patients are elected by the Board of Directors.

If you are interested in applying for membership on the PAC, BOD, or MRB click on this link to download and print an application form.

ESRD NCC Peer Mentoring Program

The NCC developed a Peer Mentoring Program (PMP) for individuals with kidney disease. The PMP fosters one-on-one partnerships between peer mentors and mentees. The program encourages mentors and mentees to collaborate and share experiences related to dialysis and/or transplant.  The PMP flyer provides an overview of the program and can be printed and shared with patients in the dialysis facility. There are two flyers. One flyer is for those interested in being a mentor, and the other is for those interested in being a mentee. The NCC provided an orientation to the PMP, and it can be viewed here: https://youtu.be/7kBh85CAoOI. You can also view the slides and Q&A from the presentation.

Additional resources include: