1999 Annual Statistical Report
F. Community Outreach Activities.
The Renal Network acts as a clearinghouse to provide information concerning ESRD technology and treatment advances to ESRD professionals, patients, and other interested persons and organizations. Information received or generated by the Network was disseminated to the appropriate individuals at the discretion of the Executive Director or other appropriate staff persons. During 1999 information was distributed Network-wide in the following manner:
Patient Newsletter, Renal Outreach.
The Renal Network publishes a newsletter for patients in the four-state area. While ESRD patients are the primary audience, ESRD professionals and members of the renal community receive the newsletter, as well. In total, about 10,000 copies are distributed with each mailing.
Renal Outreach provides a continuing means of communication to all patients within Network 9 & 10. It contains information on new therapies, medications, nutrition, exercise, and general topics of interest, as well as news of Network 9 & 10 and Patient Leadership Committee activities. Patients are encouraged to submit their ideas for articles and to write articles for the newsletter. Each newsletter contains at least one article written by a patient.
Network 9&10 Handbook - Policies and Procedures.
The Network 9 & 10 Handbook was developed to ensure all member facilities are continuously apprised of Network 9&10 policies and procedures as approved by Network 9&10 Coordinating Council. The Handbook is updated periodically as policies are developed or are amended.
Web Site: www.therenalnetwork.org
This web site is intended to provide information about Networks 9/10 activities, and links to other resources in the renal community. The front page is updated monthly with news. Policies, procedures, and selected data items are added as they become available.
Patient Handbook, Living With Kidney Disease: A Patient Manual.
During 1999, The Renal Network continued to distribute its patient manual to ESRD providers within Networks 9/10. The manual provides an overview of many different aspects of kidney failure, such as treatments (including transplantation), diet, exercise and activity, Medicare and insurance. In 1999, the manual was distributed on an "as available" basis.
- New and Updated Resources:
- Nutrition: A Resource Guide for ESRD Patients was developed.
- Exercise: A Resource Guide for ESRD Patient Activity Programs was developed.
- Handout on Quality of Life was developed.
- The Network Brochure was updated.
- The Patient-to-Patient Handbook, Coordinator’s Guide, and Training Guide were updated and revised.
- Educational and Cooperative Activities:
- Two Patient-to-Patient Training Programs were conducted, both in Ohio.
- ESRD Special Edition of Adventure Park, a board game, was developed with Cancervive, distributed to Network pediatric facilities and made available to other organizations.
- A CD-ROM educational game was developed by students at Indiana University/Purdue University in Indianapolis with input from the Network’s Patient Leadership Committee. Patient Services staff presented information at two of their class sessions on campus.
- Patient Services staff had an educational booth at the Chicago Friends of Polycystic Kidney Research Foundation’s meeting in October.
- Patient Services staff presented patient education information and provided resources at the Kentucky Social Workers meeting in October.
Other Activities.
As events warrant, informational bulletins are sent to the appropriate individuals. These releases of information may be sent to committee members, council members, professional disciplines, patients or other related organizations. If necessary, a general release may be sent to all interested parties.
News of general interest is included in the newsletters of Network 9 & 10 to ensure that the network membership is kept informed of activities on a continuing basis. Network 9 & 10 maintains a mailing list, by category, on computer to facilitate clearinghouse functions. This listing is continuously updated to provide an efficient mailing process.
Additionally, Network 9&10 responds to individual requests for information as these are received. The requests come from a variety of individuals, from dialysis patients and family members, renal professionals, students, researchers, and planning organizations and/or dialysis corporations.
8. ESRD Community Relations
Networks 9/10 uses its database as a constant source of information on the ESRD population for the renal community. During 1999, Networks 9/10 filled requests for Statistical Report data, for ZIP Code and county data, for facility demographic profiles, for SMR data, for core indicator data, and compliance data.
Data requests are received continuously from a variety of interested parties, including:
Requests from facilities for information on their own programs. Often these requests ask for historical information to allow the facility to assess trends. SMR data was also released which displayed a facility's ratio compared to the Network. This allows the facility to make comparison of its ratio with its peers.
Requests from organizations attempting to establish new ESRD programs within a given area, or from current providers who are attempting to expand their services. Data often requested includes capacity and utilization figures, and patients by residence, divided by county or ZIP Code. (All patient data released is done within the confines of established HCFA confidentiality rules.)
Requests from state health planning agencies to assist them in assessing the need for ESRD service when reviewing Certificate of Need (CON) applications.
Requests from researchers in a variety of interests, such as patients dialyzing by modality, by diagnoses, demographic information, and transplantation.
9. Nephrology Conference
In combining its roles as an information clearinghouse and a professional renal association, The Renal Network sponsors the Nephrology Conference each year. The 1999 Nephrology Conference was held on May 19, 20, and 21 at the Indiana Convention Center and Westin Hotel in Indianapolis, Indiana. This annual, three-day event is designed to allow members of the Network to come together to conduct Network business while providing educational opportunities and allowing for the exchange of ideas among members of the renal community in Illinois, Indiana, Kentucky and Ohio.
The goal of the Conference is to offer a multi-disciplinary scientific seminar, individual meetings of different professional groups, and to provide awards to those individuals and facilities who have excelled in meeting of Network goals during the year. These activities are planned in conjunction with meetings of the Medical Review Board and the Network Coordinating Council.
The Network recognizes achievement among its members by presenting awards for individuals who have made outstanding contributions to the Network, and also who have gone above and beyond the minimum to meet network reporting requirements, both in data and quality assurance.
The event is organized by the Network Planning Committee to ensure input from the Network members. Additionally, Network-wide professional groups for administrators, social workers, technicians and registered dietitians were formed to facilitate planning individual sessions for these disciplines. The Network works in conjunction with the American Nephrology Nurses Association to plan a full-day session for nurses. All programs are designed to provide continuing education credits for participants, which enhances the value of these offerings to Network members.
To further integrate the conference into the renal community, businesses dealing in renal products are invited to exhibit during the event. This serves the dual purpose of providing useful information to conference participants while underwriting the event through these sponsors.
G. Grievances
The Medical Review Board developed a "Policy and Procedure to Evaluate Formal Complaints" to address grievances filed with the Network. This policy is in compliance with the HCFA national policy for evaluating and resolving patient grievances. In addition, a special subcommittee of the Medical Review Board is designated to deal with grievances.
The Network 9 grievance policy was written and approved by the Medical Review Board, approved by the Executive Committee and approved and adopted by the Network Coordinating Council. A copy of the policy was then distributed to all facilities within the Network area. An article explaining the grievance policy was also published in Renal Outreach, the patient newsletter of Networks 9/10. Additionally, a summary of the grievance process is available on the Network web site.
Network staff members routinely handle many requests for assistance directly from patients and their families, as well as facility staff members. These requests mainly involve supplying information from various sources available to the Network, such as location of dialysis centers, help with transient dialysis, location of isolation stations, specific federal regulations, etc. In some instances, the Network may act as a go-between, making an initial contact for an individual who is seeking assistance.
In total, the Medical Review Board heard 13 grievances during the course of 1999.
Vocational Rehabilitation.
The area of renal rehabilitation was addressed in a number of ways by the PAC, the PLC, and Patient Services; the following actions were accomplished during 1999:
Articles related to aspects of rehabilitation were included in the patient newsletter.
Exercise: A Resource Guide for ESRD Patient Activity Programs was developed and made available to patients and staff.
Distributed the educational booklet, New Life, New Hope: A Book for Families & Friends of Renal Patients, as requested.
The Patient/Family Needs and Interest Project addressed and summarized the comments of patients and families regarding issues related to work and going back to school.
Special Project’s Coordinator co-authored an article "Improving Physician –Patient Communication Can Increase Success of Rehabilitation" in the February issue of Nephrology News and Issues.