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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.

These resources support the people who care for individuals living with kidney disease.

Resources

Resources

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

Resources

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

  • Tips for Staying Healthy Outside of the Dialysis Clinic – The information in this handout was gathered by patients to help patients remain healthy outside the dialysis clinic. (2020 BSI Affinity Group)
  • Tips for Staying Healthy Outside of the Dialysis Unit (Spanish) – The information in this Spanish-language handout was gathered by patients to help patients remain healthy outside the dialysis clinic. (2020 BSI Affinity Group)
  • Guide to a Healthier You – This resource is a quick overview of what you need to know about your dialysis treatment. (2020 BSI Affinity Group)
  • Guide to a Healthier You (Spanish) – This  Spanish-language resource is a quick overview of what you need to know about your dialysis treatment. (2020 BSI Affinity Group)
  • 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.
    (2017 BSI Affinity Group)
  • We’re on the Right Track (Spanish) – Focusing on infection rates in dialysis facilities, this resource allows for tracking and posting of infection rates.
    (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)

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. 

  • 2020 Introduction to Dialysis
  • 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

  • How Dialysis Feels – A resource to explain dialysis and how it works. 
  • How Dialysis Feels (Spanish) – A resource to explain dialysis and how it works. 
  • Questions to Help with Your Treatment Choices – A handout designed to help you develop questions to ask your healtcare team about your treatment options. (2020 Patient-Selected Topic Affinity Group)
  • Questions to Help With Your Treatment Choices (Spanish) – A Spanish-language handout designed to help you develop questions to ask your healtcare team about your treatment options. (2020 Patient-Selected Topic Affinity Group)
  • Questions to Get You Started – A resource to help you develop questions to ask your healthcare team after you begin treatment. (2020 Patient-Selected Topic Affinity Group)
  • Questions to Get You Started (Spanish) – A  Spanish-language resource to help you develop questions to ask your healtcare team after you begin treatment. (2020 Patient-Selected Topic Affinity Group)
  • Preventing Peritonitis Peritonitis: Symptoms, Treatment, Prevention – This resource is designed to help you recognize the signs and symptoms of peritonitis, as well as provide information on how its treated.
  • 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)
  • Tips for Kidney Caregivers (Spanish) – 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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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

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

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