Many stakeholders complement the efforts of the End Stage Renal Disease (ESRD) Quality Incentive Program (QIP) to improve the quality of dialysis care provided to beneficiaries with ESRD. Some of those entities are highlighted in the following non-comprehensive list. Additional stakeholders are referenced on many of these websites.
ESRD Center on CMS.gov
The ESRD Center is a repository for technical information about the ESRD billing and payment processes, Conditions for Coverage, and other topics.
ESRD Network Organizations
The 18 Network Organizations across the United States are contracted by CMS to develop a relationship with the dialysis professionals, providers, and patients and create a collaborative environment to improve patient care. These regional ESRD Network Organizations also assist CMS in understanding the needs of ESRD patients by including patients in quality improvement activities and meetings with CMS.
The National Forum of ESRD Networks
The Forum of ESRD Networks is a nonprofit organization that advocates on behalf of its membership, and coordinates projects and activities of mutual interests to ESRD Networks. All eighteen ESRD Networks are members of the Forum, which facilitates the flow of information among stakeholders and advances a national quality agenda with CMS and other renal organizations.
The ESRD National Coordinating Center
Eighteen ESRD Network Organizations, organized regionally, serve as liaisons between the federal government and providers of ESRD services. The ESRD National Coordinating Center (NCC) provides support and coordination at the national level for the Medicare ESRD Network Program under contract with CMS. The NCC supports improvement in the three core goals of the program (better care for the individual through beneficiary- and family-centered care; better health for the ESRD population; and reduced costs of ESRD care by improving care.
Care Compare on the Medicare.gov website is a Medicare service that helps beneficiaries, caregivers, and others find detailed information about Medicare-certified dialysis facilities. Individuals can compare the services and the quality of care that facilities provide; the website also has other resources for patients and family members who want to learn more about chronic kidney disease and dialysis.
National Healthcare Safety Network
The Center for Disease Control and Prevention’s (CDC) National Healthcare Safety Network (NHSN) is the nation’s most widely used healthcare-associated infection (HAI) tracking system, providing data needed to identify problem areas, measure progress of prevention efforts, and ultimately eliminate HAIs. In addition, NHSN allows healthcare facilities to track blood-safety errors and important healthcare process measures, such as the influenza-vaccine status of healthcare personnel and adherence rates for infection control. NHSN functions as an important data source for ESRD QIP performance measures.
The CDC also offers an excellent resource on the patient’s role in his or her own safety from acquiring an HAI.
Another excellent CDC resource involves patient safety when receiving dialysis treatment.
MyCROWNWeb.org provides resources to help the ESRD community better understand and use the ESRD Quality Reporting System (EQRS). The resources and tools on the MyCROWNWeb website educate users on how to collect and transmit ESRD data electronically to Medicare. MyCROWNWeb has educational resources that demonstrate how to admit, track, and discharge patients in EQRS. Resources also include training and quick start guides on completing CMS forms and submitting clinical data, including vascular access and lab information, to Medicare.
In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems Survey
The In-Center Hemodialysis (ICH) Consumer Assessment of Healthcare Providers and Systems (CAHPS) measures, collects, and publicly reports the experiences of people receiving ICH care from Medicare-certified dialysis facilities. The survey is used to evaluate facility performance as an ESRD QIP reporting measure.
United States Renal Data Service
The United States Renal Data Service (USRDS) is a national data system that collects, analyzes, and distributes information about ESRD in the United States. Six central goals define the mission of the USRDS: to characterize the ESRD population; to describe the prevalence and incidence of ESRD along with trends in mortality and disease rates; to investigate relationships among patient demographics, treatment modalities, and morbidity; to report the costs of ESRD treatments and total burden of the ESRD program in the United States; to identify new areas for special renal studies and support investigator-initiated research; and to provide data sets and samples of national data to support research by the Special Studies Centers.
Dialysis Outcomes and Practice Patterns Study Program
The Dialysis Outcomes and Practice Patterns Study (DOPPS) program is a collection of studies designed to identify best practices for treating patients with chronic kidney failure. DOPPS helps researchers identify practices and other modifiable characteristics that improve patient lives. DOPPS projects are coordinated by Arbor Research Collaborative for Health.
National Quality Forum
The National Quality Forum (NQF) is a nonprofit, nonpartisan, membership-based organization that works to catalyze improvements in healthcare. NQF convenes working groups to foster quality improvement in the public and private sectors alike, endorses consensus standards for performance measurement, including for treating patients with ESRD, ensures that consistent, high-quality performance information is publicly available, and seeks real-time feedback to ensure that measures are meaningful and accurate. NQF endorsement is the “gold standard” for healthcare quality measures, such measures are evidence-based and valid.
United Network for Organ Sharing
The United Network for Organ Sharing (UNOS) promotes long, healthy, and productive lives for persons with organ failure by promoting maximized organ supply, effective and safe care, and equitable organ allocation and access to transplantation. It seeks to advance organ availability and transplantation by uniting and supporting its communities for the benefit of patients through education, technology, and policy development.
Children’s Organ Transplant Association
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving organ, bone marrow, cord blood, or stem cell transplant by providing fundraising assistance and family support. COTA also works with any patient who needs a transplant due to a genetic disease such as cystic fibrosis or sickle cell anemia.
Patient-Centered Outcome Research Institute
The Patient-Centered Outcome Research Institute (PCORI) funds and evaluates research aimed at improving health care decisions. PCORI also funds research to compare available treatment options for various diseases and conditions and is required to share the findings of the research.
Kidney Health Initiative
The Kidney Health Initiative (KHI) is a partnership between pharmacy, government, professional, and patient organizations to enhance patient safety and foster innovation in the treatment of kidney diseases. These organizations work together to advocate for equitable access to kidney care, bring kidney health to the top of the international health policy agenda, and ensure patients living kidney disease are at the center of policy decision-making.
Making Dialysis Safer for Patients Coalition
The Making Dialysis Safer for Patients Coalition is a partnership of healthcare-related organizations, patient advocacy organizations, and industry partners who have joined together to prevent bloodstream infections among patients receiving hemodialysis. Led by the Centers for Disease Control and Prevention, the Coalition’s goal is to improve adherence to evidence-based recommendations, share information and experiences, and engage patients in infection prevention efforts.
National Institute of Diabetes and Digestive and Kidney Diseases
The National Institution of Diabetes and Digestive and Kidney Diseases (NIDDK) conducts and supports research and provides leadership for national programs in diabetes, endocrinology, and metabolic diseases; digestive disease and nutrition; and kidney, urologic, and hematologic diseases. The goal of the NIDDK and its research is to improve people’s health and quality of life.