Locating ESRD Policy Information Online (Legislative Update, ANNA Update, July/August 2004)

Locating ESRD Policy Information

Many of you may have asked the question "Who do I call, where do I look, how can I find specific information or policy on the ESRD program?" This article includes common electronic resources for policy information. ANNA members can gather information from these sources to answer questions from patients or other health professionals, or find information needed to prepare for an ANNA chapter meeting.

Our Evolving Electronic Practice

The 21st century will be an era of distance learning. From a public policy perspective, one of the most critical issues facing nursing today is the necessity of being responsive to the unprecedented advances that are evolving within the communications and technology fields. Entire nursing school curriculums are being designed to be online. Continuing education was even ahead of this trend. Today it is possible to provide the elements of the classroom, the professor, and fellow students in an electronic format, without the learner being in a fixed time and place when a lecture is being given.

In the clinical arena, nurses are sending and receiving more patient data by electronic means - desktop computers, hand-held personal assistants, laptop computers, electronic tablets, cell phones, videophones, interactive TVs, etc. These tools are being integrated into the daily practice of clinical nurses as we all evolve into an "electronic practice."

All health professionals must be lifelong learners. The American public needs and desires competent, efficient health professionals who have the necessary knowledge plus the communications skills for our increasingly diverse society. Clinical nephrology nursing staff must be able to access pertinent information resources to assist them with critical information in a "just-in-time" fashion.

Nephrology nursing is a steadily maturing profession in the 21st century. This century will bring us many exciting opportunities in the public policy realm. With continuing education, either in a classroom or via the Internet on a home computer, we will continue to mature and contribute to ESRD policy.

Resources for ESRD-Specific Information

The following list includes resources that need to be part of a nephrology nurse's toolbox when updating files on ESRD policy issues.

  • ESRD Information Resource


    This site includes a general listing of all ESRD initiatives and sites for all your information needs. Start here for your search for information on the ESRD program. This is the #1 place to go for ESRD information.
  • Centers for Medicare & Medicaid Services (CMS)


    To find the ESRD program from this central Web site, first click on "Professionals," then scroll down on the menu, and click on "End-Stage Renal Disease Program." If you are looking for an individual who is a key staff member to answer an ESRD program-specific question, email one of the individuals listed below. If the staff below can’t answer your question, they will refer you to another CMS person who can help.

    Brady Augustine – baugustine@cms.hhs.gov

    Barry Straube, MD – bstraube@cms.hhs.gov

    Rich Lawlor (ESRD Open Forums) – rlawlor@cms.hhs.gov

    Judith Kari (Survey & Certification) – jkari@cms.hhs.gov

    Gina Clemons (Networks) – gclemons@cms.hhs.gov
  • CMS Regional Offices


    It would very worthwhile to contact the CMS Regional Offices to invite these staff to visit dialysis facilities on ESRD Education Days during the summer of 2004. Barry Straube, MD, listed above, is a nephrologist employed by the San Francisco Regional Office.
  • ESRD & Clinical Labs Open Door Forums


    These Open Door Forums are held at the CMS headquarters building in Baltimore, MD. ANNA members are welcome to attend along with our legislative consultant and officers. Click on the above Web site to register to receive notices on meeting dates. You also can use a toll-free number to call in to listen and/or ask a question at every forum.
  • Dialysis Facility Compare


    This site lists all currently known dialysis facilities in the United States, including address, phone number, dialysis modalities offered, etc. This list is helpful if your patients are interested in traveling to another part of the country. The site also has comparative quality measures listed for the facilities.
  • Medicare Modernization Act (MMA)


    The full name of this law is Medicare Prescription Drug, Improvement and Modernization Act of 2003. We are still analyzing this mammoth bill to determine how it will affect our practice.
  • Kidney Care Partners


    Kidney Care Partners (KCP) is an alliance of patient advocates, dialysis professionals (including ANNA), providers, and suppliers working together to improve the quality of care for individuals with ESRD. KCP is preparing an ESRD-specific bill with the Washington, DC firm of Patton & Boggs to be rolled out in July 2004. ANNA and other members of KCP will receive detailed information on this legislation to use on ESRD Education Days throughout the summer of 2004.
  • 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 interest to all 18 ESRD Networks. The mission of the Forum is to support the ESRD Networks in promoting and improving the quality of care to patients with renal disease through education and the collection, analysis, and dissemination of information.
  • Fistula First Project


    This is a major project of the ESRD Networks to increase the placement and utilization of AV fistulas.
  • Disease Management Demo


    The ESRD Disease Management Demonstration allows selected organizations serving ESRD patients to receive a capitation payment in order to test the effectiveness of disease management models in increasing quality of care and containing costs. Another option is a fee-for-service model, by which the organization providing disease management services will coordinate the health care of beneficiaries.
  • Clinical Performance Measures (CPMs) Project


    A huge endeavor merged the ESRD Core Indicators Project with the ESRD CPMs Project. The project is now known as the ESRD CPMs Project. The ESRD CPMs are similar to the core indicators with the addition of measures for vascular access. The ESRD CPMs are collected annually on a national random sample of adult hemodialysis and peritoneal dialysis patients.
  • United States Renal Data System (USRDS)


    Data, numbers, and statistics in abundance! There is a marvelous slideshow at www.usrds.org/

    slides.htm that provides the 2003 Annual Data Report information. This is an excellent source of data by state to give the policymakers who visit your dialysis facilities on ESRD Education Day.
  • Dialysis Outcomes & Practice Patterns Study (DOPPS)


    The DOPPS study is an ongoing observational study of hemodialysis patients in 12 countries seeking to identify dialysis practices that contribute to improved mortality rates, hospitalization rates, health related quality of life, and vascular access outcomes.
  • Survey and Certification


    CMS maintains oversight of the survey and certification of nursing homes and continuing care providers (including hospitals, nursing homes, home health agencies, ESRD facilities, hospices, and other facilities serving Medicare and Medicaid beneficiaries), and makes information about these activities available to beneficiaries, providers/suppliers, researchers, and state surveyors.
  • Conditions of Participation and Conditions of Coverage - ESRD Services


    Several Medicare programs are listed. Click on both ESRD and Organ Donation and Transplantation to retrieve these documents. A revision of the original 1976 ESRD conditions is rumored to be coming out this summer!
  • Fact Sheet on Dialysis Coverage in Skilled Nursing Facilities (SNFs)


    Prepared in 2002, this Fact Sheet answers many questions dialysis providers have about providing services in skilled nursing facilities.
  • List of Primary Causes of ESRD


    Certainly a good list of causes of ESRD for nursing staff to review in relation to their current patients.

Nancy J. Sharp, MSN, RN, FAAN

Legislative Consultant