The 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.
- 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
- ESRD National Coordinating Center (NCC) National Patient and Family Engagement Learning and Action Network (NPFE-LAN)
This is the website for the NPFE-LAN that works with ESRD patients, family members, and caregivers, to bring the patients point of view to the kidney community, helping to drive quality improvement.
- American Association of Kidney Patients (AAKP)
This is the website for the AAKP, an independent organization that is dedicated to improving the quality of life for kidney patients through education, advocacy, patient engagement and the fostering of patient communities. they provide education, advocacy, and a patient community.
- What You Can Do to Make Healthcare Safer
A fact sheet is that explains how you can ensure a safer experience with the healthcare system by being involved and informed about your treatment.
- “Preventing Infections in the Hospital – What You Can Do: A Consumer Fact Sheet” (National Patient Safety Foundation [NPSF])
A fact sheet designed for patients that provides basic principles for managing their own health care and becoming active partners with their healthcare teams.
- Glossary of Terms
A glossary that includes words selected by consumers to help their peers understand terms related to transitions out of an inpatient care environment.
- 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.
- National Kidney Foundation (NKF) of Hawaii
NKF Hawaii’s Facebook page offers information about events, education, and access to an online ESRD community. Their “Ask the Dietitian” blog allows you to post questions and receive important nutritional information for people with kidney disease from informed sources in an informal manner.
- 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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