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National Patient and Family Engagement Learning and Action Network (NPFE-LAN)

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The Patient Voice Helps Drive Quality Improvement!

The NPFE-LAN is a partnership between patients, family members, caregivers, and dialysis providers. It is a vehicle for bringing the patient voice to the kidney community that creates opportunities for in-depth learning, problem solving, and achievement of patient driven goals for quality improvement at the national level. In the NPFE-LAN, patients, family and caregivers are the subject matter experts (SMEs) who drive change across all Networks and dialysis facilities, helping to solve shared problems on a large scale.

In the NPFE-LAN, SMEs share their stories, ideas, and perspectives on how to improve the way things work at the facility level so patients receive better care. A SME is an expert who knows what it is like to live with kidney disease, and is willing to share his or her experiences to improve the quality of care for all kidney patients. Patients, family members, and caregivers serve as SMEs.

To learn more about participating in the NPFE-LAN, contact your ESRD Network.

NPFE-LAN Affinity Groups

Each year, the NPFE-LAN has four separate small groups, called Affinity Groups, focused on specific areas of dialysis and transplant care. The groups meet monthly by webinar (phone and/or computer) to share experiences and discuss ways to improve the quality of care for kidney patients and meet the Centers for Medicare & Medicaid Services (CMS) quality improvement goals. Read below to see what the NPFE-LAN is accomplishing this year.

2018 Accomplishments

Activities

SMES in the BSI Affinity Group have been working toward achieving the CMS goal of reducing the national rate of BSIs in patients by 50 percent of the BSIs that occurred in 2016 by 2023. Recognizing that hand hygiene was essential to infection reduction, they identified World Hand Hygiene Day as an opportunity to celebrate and acknowledge the importance of hand washing. Resources were reviewed, and several were adopted as vital to ensuring patients, families, caregivers, and professionals understood the importance of proper hand hygiene. The SMEs then partnered with clinic staff to promote the identified materials and feature them during Lobby Days.

Resources

Activities

SMEs in the Home Dialysis Affinity Group have been working toward achieving the CMS goal of increasing the number of ESRD patients dialyzing at home to 16 percent from the 2016 national average of 12 percent by 2023. They recognized the importance of identifying the barriers to patients considering home dialysis modalities. While conducting a root cause analysis of barriers, the SMEs identified a previously-developed home dialysis myth vs. reality tool that they felt could be enhanced and expanded based on newest guidelines for home modality. The group developed the booklet titled, Uncovering Myths About Home Dialysis: Myth vs. Reality, and will partner with in-center SMEs for distribution during Lobby Days.

To encourage active conversations, Peer Connection Knowledge Calls partnered home modality patients with in-center patients to discover how home patients overcame personal barriers to transitioning to a home modality. The calls included 11 SME participants and the following topics were covered: traveling with a dialysis machine; in-center treatment options when you're away from home; convenience of home treatment; family support; caregiver support; 24-hour medical support over the phone; and payment for the fourth and fifth dialysis treatments.

Resources

Activities

SMEs in the Transplant Affinity Group have been working toward achieving the CMS goal of increasing the percentage of ESRD patients on the transplant waitlist to 30% from the 2016 national average of 18.5% by 2023. The SMEs helped uncover barriers to transplant by sharing their stories and experiences of being transplanted, which allowed for further discovery. Through barrier identification, the group identified the need to share psychosocial reasons why patients may choose not to be transplanted.

To encourage active conversations, Peer Connection Knowledge Calls partnered transplant recipients with dialysis patients to discover how they overcame personal barriers to receiving a kidney transplant. The calls included 21 SME participants and the following topics were covered: transplant waiting list testing; comorbidities the keep patients from seeking a transplant; clinical research trials; educational resources for people interested in transplantation; challenges patients may face post-transplant; and coping with depression after transplant.

Resources

Activities

Each year, members of the Patient-Selected Topic Affinity Group discuss relevant topics that are important to kidney patients and identify themes between the topics. For 2018, the group identified grief, loss, and abandonment as important attributes affecting kidney patient care. Through the sharing of personal stories related to grief, loss, and abandonment, the SMEs identified resource opportunities to support patients, families, and care team members. As part of that process, the group:

  • Reviewed a previously-piloted health status release form and recommended it for wider use.
  • Created a downloadable sympathy card and memorial poster.
  • Identified the need to celebrate patient success stories; created home dialysis and transplant celebration announcements.

Resources