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Patient and Family Engagement (PFE)

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Centers for Medicare & Medicaid Services (CMS) recognizes that patients, families, and caregivers are essential partners in the effort to improve the quality and safety of healthcare provided to all patients. It is only by including them as active members of their own healthcare team that quality can be improved and care become more patient-centered; by fully engaging patients, families, and caregivers in the design, delivery and evaluation of care, it is made safer, treatment plan adherence is increased, and hospital readmissions are reduced. Research shows that individuals who feel responsible for their own health tend to have better health outcomes.

The resources found here will help all participants on the healthcare team to fully engage in the process of care for end stage renal disease (ESRD) patients.

The following tip sheet can assist facility staff to establish the genuine engagement with patients that is essential in the provision of high-quality healthcare and to achieve improved healthcare outcomes.

The following guide provides an introduction to being a SME. It describes the role of a SME, the various boards and committees on which a SME might serve, as well as participation guidelines and term limits, where they apply. 

NEW! Facility Patient Representative (FPR) information! The FPR Program uses a patient-centered approach to spread educational information to patients, provide peer-to-peer support, and provide additional support for staff at the dialysis facility.

For Providers

As a result of the Coronavirus 2019 (COVID-19) pandemic, the Network adjusted its PFE activities during 2020. The following resources can be used to support patients and staff during the pandemic.

Please see below best practices for implementing PFE activities at the facility level.

Patient Engagement in Development of the Individualized Plan of Care and Plan of Care meetings:

  • Facilities are encouraged to continue to invite patients to POC meetings via telephone or other virtual means.  
  • Continue to engage patients in their overall Plan of Care by speaking with them about their goals and concerns.
  • Incorporate how the patient is dealing with the COVID-19 pandemic into the Plan of Care. For example:
    • Is the patient practicing physical distancing outside of the facility?
    • Is the patient having issues with childcare related to school closures?
    • Are they having issues with wearing face coverings consistently when there is a risk of exposure?
    • Are their family/caregivers/roommates following recommended COVID-19 safety measures as well?
    • Does the patient have access to food or medicine?

Engaging Patients in Quality Assessment and Performance Improvement (QAPI) Meetings or the Governing Body:

  • In lieu of inviting patients to in-person QAPI or Governing Body meetings:
    • The patient could attend via phone or other virtual means.
    • A staff member could speak with the patient(s) about their ideas and bring those ideas to the QAPI meeting on the patient’s behalf. The staff member should follow-up with the patient after the QAPI or Governing Body meeting is conducted to discuss next steps.  
       

Establishing Patient Support Groups:

The Department of Health and Human Services National Quality Strategy’s new focus on better care for the individual through beneficiary- and family-centered care involves working with patients rather than doing to or for patients. Such partnerships are mutually beneficial to the patients and the facility. Involving patients in your facility’s QAPI and/or Governing Body meetings can be an effective means of engagement and partnership. Below are some tools to help you get started.

Helpful Documents:

Continuing Education Courses:

  • QI: Culture of Change
    The purpose of this course is to provide a basic understanding of continuous quality improvement (CQI), while also addressing the stages of change. 1 Continuing Education (CE) Credit
  • Understanding Rapid Cycle Improvement
    This course aims to improve your knowledge of quality improvement by explaining each step of the improvement model and directing you to pro-actively improve care processes. 3 CE Credits 

Other Resources:

There is strong evidence that peer support can help:

  • Patients to manage chronic diseases like ESRD,
  • People to cope with stress or emotional and psychological challenges
  • Engage populations that are not always reached through interventions
  • Reduce unnecessary hospital admissions for the same problem.

Peer support is generally cost-effective and provides a personal connection that helps patients to better understand their health and expand their role in guiding their own care.

The resources below can help you to establish peer support groups in your facility(ies).

Documents

  • The COVID-19 and ESRD Tele- and Online-Support Groups handout can assist patients with locating online or phone support groups related to kidney disease and COVID-19 support.

  • The Community Patient Support Group Guidebook from the American Association of Kidney Patients (AAKP) is a resource book to help you form an independent patient support group in your local community.

  • Facilitating an ESRD Group 101

  • This  document can be provided to patients who are interested in starting a support group. It defines what a support group is, why it is difficult to find a support group, how to start one, as well as providing tips for running support group meetings.

Online and Telephone Support Group Resources

The websites listed below specialize in kidney disease. Many offer education, as well as the opportunity to connect with other end stage renal disease (ESRD) patients, family members, and/or caregivers through discussion forums and subscription-based email lists. When looking for resources, please be aware that anyone can create a website and only visit reputable sites! When searching, use keywords such as “kidney disease” or “dialysis” to find related groups. When in doubt, always consult your healthcare team.

  • Helparound Application, NXStage
    Helparound aims to help chronic patients and their support systems, overwhelmed by a life-changing condition, to simplify the day-to-day of managing treatment by magically delivering the information and support resources they need, when they need them, through their smartphones.
  • Home Dialysis Central Forums
    Home Dialysis Central is a one-stop resource for patients and professionals who want to learn more about home dialysis options—what they are, where you can find them, and why you might want to choose one over another. You can get advice from experts or other members of the home dialysis community, or you can share your knowledge with others. This site is an online discussion forum.
  • Home Dialysis Central Discussion Group on Facebook 
    This is a moderated private Facebook group. You can ask anything without worry. Group members are kind, smart, helpful, and respect each other. They welcome dialyzers, caregivers, and others for support, information, and help coming to grips with dialysis in any of its forms.
  • Nephkids Cyber-Support Group
    Nephkids is cyber-support group for parents of children with CKD. It offers an interactive email group (listserv) for parents of children with all types of chronic kidney disease.
  • NKF Peers Lending Support
    1. 855.653.7337 (1.855.NKF.PEER)
    This website from the NKF is for a new patient program that connects people needing support with peers who “have been there.”

The POC meeting is an ESRD Patient's opportunity to communicate directly with his or her healthcare team about decisions that affect their dialysis care. It is the patient's opportunity to learn more about ESRD and how his or her choices can affect various aspects of treatment. The information provided here will help you to engage more patients in their POC meetings.

  • What's Your Plan
  • My Dialysis Plan 
    The team at the University of North Carolina (UNC) Kidney Center developed My Dialysis Plan™, an interdisciplinary plan of care program to assist patients and care teams with aligning dialysis care with patient-identified priorities and improving the care planning experience. A resource created by patients for patients,with the goals of:
    • Getting more patients engaged in their dialysis Plans of Care (POC).
    • Encouraging dialysis facilities to hold POC meetings with patients.
    • Inspiring patients to attend their POC meetings.
  • Patient and Family Engagement
    Agency for Healthcare Research and Quality (AHRQ) ESRD Toolkit
  • Person-and Family-Centered Care
    This web page from the Institute for Healthcare Improvement (IHI) is dedicated to putting the patient and family at the heart of every healthcare decision and empowering them to be genuine partners in their care.
  • Partnership for Patients
    The website for the Health and Human Services (HHS) public-private partnership that works to improve the quality, safety and affordability of healthcare for all Americans.
  • The Forum of ESRD Networks
    This not-for-profit supports and advocates for the ESRD Networks in their efforts to monitor the quality of chronic kidney disease, dialysis and kidney transplant care.
  • Taking Charge of Your Healthcare: Your Path to Being an Empowered Patient 
    From Consumers Advancing Patient Safety (CAPS), this is a comprehensive toolkit that can be used by providers during hospital discharge to help patients leave the hospital with confidence.
  • Tips to Improve Patient Engagement at the Facility Level
    Tips that can assist your staff to establish the genuine engagement with patients that is essential in the provision of high-quality healthcare and to achieve improved healthcare outcomes.

For Patients, Families, and Caregivers

As a result of the COVID-19 pandemic, the Network adjusted its PFE activities during 2020. The following resources can be used to support patients, families, and caregivers during the pandemic.

Documents

  • Facilitating an ESRD Support Group 101
    This  document can help you if you are interested in starting a support group. It defines what a support group is, why it is difficult to find a support group, how to start one, as well as providing tips for running support group meetings.

Groups

  • American Association of Kidney Patients (AAKP) Community
    AAKP recognizes the value of local patient support groups and through its website and various publications, provides a centralized resource to locate support groups in their communities.
  • Home Dialysis Central Forums
    Home Dialysis Central is a one-stop resource for patients and professionals who want to learn more about home dialysis options—what they are, where you can find them, and why you might want to choose one over another. You can get advice from experts or other members of the home dialysis community, or you can share your knowledge with others. This site is an online discussion forum.
  • Home Dialysis Central Discussion Group on Facebook
    This is a moderated private Facebook group. You can ask anything without worry. Group members are kind, smart, helpful, and respect each other. They welcome dialyzers, caregivers, and others for support, information, and help coming to grips with dialysis in any of its forms.
  • Nephkids cyber-support group
    Nephkids is cyber-support group for parents of children with CKD. It offers an interactive email group (listserv) for parents of children with all types of chronic kidney disease.
  • NKF Peers Lending Support — 1.855.653.7337 (1.855.NKF.PEER)
    This website from the NKF is for a new patient program that connects people needing support with peers who “have been there.”
  • Renal Support Network (RSN) — HOPEline 1.800.579.1970
    The RSN website empowers people who have kidney disease to become knowledgeable about their illness, proactive in their care, hopeful about their future, and to make friends through informative, patient-directed programs.
    RSN Facebook Page

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