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

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The Patient Voice Drives Quality Improvement!

The NPFE-LAN is a partnership between patients, family members, caregivers, and dialysis providers. Where patients, family and caregivers are the subject matter experts (SMEs). SMEs share their stories, ideas, and perspectives on how to improve the way things work at the facility level to improve the patient experience. They drive change across all end stage renal disease (ESRD) Networks and dialysis facilities, helping to solve shared problems on a large scale.

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

NPFE-LAN Affinity Groups

Each year, the NPFE-LAN holds four separate 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.

SMES in the BSI Affinity Group create resources to support the CMS goal of reducing the national rate of BSIs in dialysis patients by 50 percent of the BSIs that occurred in 2016 by 2023.

Resources

  • Test Your Knowledge Tutorial – An interactive learning module designed to increase knowledge of proper hand hygiene and demonstrate proper hand washing techniques in a dialysis facility setting. The module is mobile-friendly and can be shared through text messaging.
    (2019 BSI Affinity Group)
  • World Hand Hygiene Day Celebration  – While celebrating world hand hygiene day on May 5, 2018, the Affinity Group also identified several online resources to prevent sepsis in health care.
    (2018 BSI Affinity Group)
  • Conversation Starter to Prevent Infections in Dialysis Patients – This resource from the Centers for Disease Control and Prevention (CDC) was identified as helpful in starting a conversation about preventing infections.
    (2018 BSI Affinity Group)
  • CDC Audit Tool: Hemodialysis hand hygiene observations – This audit tool resource from the CDC is recommended for hemodialysis hand hygiene observations.
    (2018 BSI Affinity Group)
  • We’re on the Right Track – Focusing on infection rates in dialysis facilities, this resource allows for tracking and posting of infection rates. Poster instructions (link not working).
    (2017 BSI Affinity Group)
  • CDC Clean Hands Count — The ESRD NCC NPFE-LAN members adapted the CDC's Clean Hand's Count campaign to make the materials applicable to ESRD and dialysis care. 
    (2016 BSI Affinity Group)

SMEs in the Home Dialysis Affinity Group develop interventions to support 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

Resources

  • Let’s Talk: Home Dialysis – An interactive tool to help patients and caregivers start a conversation about home dialysis treatment options.
    (2019 Home Dialysis Affinity Group)
  • Home Dialysis Peer Connection Call – A recording of a national call that provided an opportunity for patients and family members to ask questions, speak to, and learn from patients who made the decision to dialyze at home.
    (2019 Home Dialysis Affinity Group)
  • Uncovering Myths About Home Dialysis: Myths vs. Reality – A booklet highlighting common myths and facts about home hemodialysis and peritoneal dialysis.
    (2018 Home Dialysis Affinity Group)
  • Home Dialysis Announcement— poster and flyer for celebrating and announcing when a patient chooses a home dialysis treatment.
    (2018 Patient-Selected Topic Affinity Group)
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SMEs in the Transplant Affinity Group create resources that support the CMS goal of increasing the percentage of ESRD patients on the transplant waitlist to 30 percent from the 2016 national average of 18.5 percent by 2023.

Resources

  • Partnering Along the Road to Transplant – A handout detailing five key steps to effective communication between patients and healthcare professionals.
    (2019 Kidney Transplant Affinity Group)
  • Kidney Transplant Peer Connection Call – A recording of a national call that provided an opportunity for patients and their family members to ask questions, speak to, and learn from transplant recipients who made the decision to receive a kidney transplant.
    (2019 Kidney Transplant Affinity Group)
  • Why Transplant is a Good Idea for Me  – A flyer addressing patients’ common concerns and fears about transplantation.
    (2018 Kidney Transplantation Affinity Group)
  • The Road to Transplant - A brochure offering tips for patients considering receiving a kidney transplant.
    (2018 Kidney Transplantation Affinity Group)
  • Transplant Celebration Announcement — poster and flyer for celebrating and announcing when a patient receives a kidney transplant
    (2018 Patient-Selected Topic Affinity Group)
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Each year, members of the Patient-Selected Topic Affinity Group discuss relevant topics that are important to kidney patients and identify the theme for the Affinity Group.

  • 2019 Emotional well-being for patients and caregivers
  • 2018 Grief, loss, and abandonment
  • 2017 Setting SMART goals to staying active in their care and lives
  • 2016 Thriving with kidney disease

Resources

  • Goal Setting: Getting Back to Me – This workbook is designed to help patients restore their sense of dignity and increase self-esteem through goal setting. (2019 Patient-Selected Topic Affinity Group)
  • Tips for Kidney Caregivers – A handout addressing the emotional health of caregivers by providing practical advice and suggestions for caregivers.
    (2019 Patient-Selected Topic Affinity Group)
  • Caregiver Peer Connection Call – A recording of a national call that provided an opportunity for caregivers, care partners, and family members of someone with kidney disease to ask questions, speak to, and learn from others who care for a loved one with kidney disease.
    (2019 Patient-Selected Topic Affinity Group)
  • Health Status Release Form – An authorization form providing consent to share a change in health status with identified individuals.
    (2018 Patient-Selected Topic Affinity Group)
  • Memorial Card – A printable memorial card.
    (2018 Patient-Selected Topic Affinity Group)
  • In Memory Poster – poster and flyer to recognize the life of a deceased patient. (2018 Patient-Selected Topic Affinity Group)
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  • Home Dialysis Announcement - poster and flyer for celebrating and announcing when a patient chooses a home dialysis treatment.
    (2018 Patient-Selected Topic Affinity Group)
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  • Transplant Announcement - poster and flyer for celebrating and announcing when a patient receives a kidney transplant
    (2018 Patient-Selected Topic Affinity Group)
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These resources support the people who care for individuals living with kidney disease.

Resources

  • Tips for Kidney Caregivers – A handout addressing the emotional health of caregivers by providing practical advice and suggestions for caregivers.
    (2019 Patient-Selected Topic Affinity Group)
  • Caregiver Peer Connection Call – A recording of a national call that provided an opportunity for caregivers, care partners, and family members of someone with kidney disease to ask questions, speak to, and learn from others who care for a loved one with kidney disease.
    (2019 Patient-Selected Topic Affinity Group)

 

Additional resources were developed by Affinity Groups providing education about the grievance processes and In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems (ICH-CAHPS) surveys.

Resources

  • My Experience of Care Card – This card helps kidney patients track the care they receive at a dialysis center. The information can be used to help patients complete the ICH-CAHPS survey.
    (2017 ICH-CAHPS Affinity Group)
  • Grievance Toolkit, One-Page Summary – A one-page summary highlighting the 41-page Grievance Toolkit created by the Forum of ESRD Networks Kidney Patient Advisory Council (KPAC).
    (2017 Grievance Satisfaction Affinity Group)
  • What is the ICH CAHPS Survey? – A poster explaining the In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems survey.
    (2016 ICH CAHPS Affinity Group)
  • Nothing About Me Without Me – A handout explaining the importance of patients participating in the In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems survey.
    (2016 ICH CAHPS Affinity Group)
  • Improving Patient-Centered Care – A brochure explaining how the In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems survey for can help improve patient care.
    (2016 ICH CAHPS Affinity Group)
  • Patient Grievances, A Guide for ESRD Patients – A brochure and form developed to explain the process of reporting a grievance.
    (2016 Grievance Satisfaction Affinity Group)