Forward

When people experience renal failure, they become part of a community --- actually several communities --- including other patients, facility staff (doctors, nurses, social workers, technicians, dieticians, administrators) and the End Stage Renal Disease networks. Keeping the lines of communication open and moving among so many different individuals and groups of people is not easy. Yet under such circumstances communication is not only important but also vital to the well being of the kidney patient.

The Renal Network recognizes that good communication is at the center of the helping process, so it has taken the best local model of patients, facility staff and the Network working cooperatively and pulled it together into a written format and made it available to all.

The Client Communication System (CCS) is a process, a guide that helps organize the flow of communication among patients, the facility and the Network. The aims of the CCS are to:

• Let patients know what’s going on.
• Give facility staff a way to reach patients with information and to receive patient viewpoints on issues or concerns.
• Provide a method for the Network to tell patients about educational materials (the pamphlets and programs) and to hear from patients about their needs, interests and comments.

Patients, facility and the Network can use the CCS program on an equal basis to communicate to any part or all parts of the community.

The Client Communication System is an outgrowth of the Kentucky PAC, the Network’ s Patient Leadership Committee and the Network’s Patient Services Department.

For more information, contact:

Kathi J. Niccum, Ed.D.

Director of Patient Services

The Renal Network, Inc.

911 E. 86^th Street, Suite 202

Indianapolis, IN 46240

1-800-456-6919

317-257-8265

317-257-8291, fax

email: [email protected]

Introduction

The Renal Network, Inc. is part of the End-Stage Renal Disease (ESRD) networks established by the Health Care Financing Administration (HCFA) to monitor the treatment of patients in dialysis and transplant centers in Illinois, Indiana, Kentucky and Ohio. Patient participation is a high priority of The Renal Network and patients are included throughout the organization in the Board of Trustees, the Medical Review Board, the Network Coordinating Council, the Patient Leadership Committee (PLC) and in the Patient Advisory Council (PAC).

The PAC is made up of patient volunteers appointed by the facility. The Network recommends that each facility appoint a PAC representative and a PAC Alternate to the Patient Advisory Council. The PAC representative and alternate are volunteers working on their own time to help keep patients in their facilities informed and involved.

To make the flow of information easier, the Network promotes the adoption of the Client Communication System (CCS). The PAC representative and the PAC Alternate work closely together to establish and maintain this system of information flow. The Network asks that each facility appoint a staff person, or CCS Staff Coordinator, to work with the PAC representative to manage the program.

To manage the program, the PAC representative and staff coordinator will meet regularly to discuss ways to address the ideas, needs, concerns and comments coming from the patients. Some they may be able to resolve themselves, others they may bring to another department and still other issues they may bring to administration or the Network for a response.

The Client Communication System also recommends that additional volunteers, or CCS Spokespersons, be recruited for every shift. CCS Spokespersons will be the ones, who stay in touch with patients directly and pass along information and news. The spokespersons will gather and relay patient concerns and views on issues, needs and interests from among the patient population to the PAC Representative.

Read through this guidebook carefully so you have an understanding of the Client Communication System program. Think about it, and come up with some preliminary ideas of how you can make the program work at your facility. Remember that every facility is different and has its own set of needs. For example, small facilities may not need a spokesperson on every shift and facilities where patients already have an existing community meeting may not require a separate CCS patient meeting. Also as you plan, think about the special needs of communicating with all patient groups that your facility serves.

The Client Communication System will require some initial effort to put in place, but the improvements in communication and patient participation will benefit all.

CLIENT COMMUNICATION SYSTEM (CCS)

The Network recommends the adoption of the Client Communication System (CCS) as the means to establish and maintain the flow of communication.

Purpose

The purpose of this program is to improve the sharing of information among the Network, facility administration, unit staff, and patients.

Structure

To function effectively, the Client Communication System requires the cooperative efforts of the following:

1. A facility appointed patient representative to the Network’s Patient Advisory Council who together with a designated staff member manages the program.
2. A Staff Coordinator;
3. A facility appointed patient alternate for the PAC;
4. Spokespersons (for each modality / hemodialysis shift the facility serves);

How It Works

• As a first step to accomplishing this goal, the PAC representative meets with the Facility Administrator to explain how the Client Communication System works and to get his/her support for starting the program. Each facility appoints a staff person, or Staff Coordinator, to work with the PAC representative to manage the program. Facility administration approval, as well as, staff appointment to the program is necessary to its success. Without it the PAC representative and alternate will not be able to initiate the program.

CCS Spokespersons meet with patients on their shift

• Generally, one or two people cannot effectively be available to every patient on every shift throughout the week. So the Client Communication System suggests that additional volunteers, or CCS Spokespersons, be recruited for every shift to be available to all patients on that shift, as well as, a separate spokesperson for home dialysis, peritoneal dialysis and transplant persons.

• Ideally, the PAC representative and staff coordinator will hold CCS general meetings on a regular basis in the facility to familiarize the spokespersons and other interested persons with CCS activities and to gather and document the ideas, needs, concerns and comments of the facility patients and staff.

• Together, the PAC representative and staff coordinator meet to discuss ways to address the ideas, needs, concerns and comments coming from the patients. Some they may be able to resolve themselves, others they may bring to another department and still other issues they may bring to administration or the Network for a response.

Examples of How It Works

Just so you can get an idea of how this flow of communication could possibly work, this section presents two examples.

Example A: Information from the facility administration to the patient population may follow this route:

Administrator Meets with PAC representative,

alternate and staff coordinator

1. The facility administrator informs the staff coordinator and PAC representative of a change in facility policy.
2. The staff coordinator and PAC representative along with the alternate may meet to work out the strategies for distributing the policy and obtaining feedback. Copies of the policy and posters are created for distribution.
3. The PAC representative and staff coordinator hold a meeting of spokespersons and other interested persons to present the policy change and provide materials to be distributed and posted.
4. The spokespersons distribute policy changes and suggest that questions or concerns be reported back to him/her or placed in the suggestion box.
5. At the next meeting spokespersons may report back to the staff coordinator and PAC representative any comments or concerns voiced to them or spokespersons may choose to report back individually.

Example B: Patient information to the facility and/or the Network may follow this route:

Patient presents CCS spokesperson with concern

1. A patient talks to the shift spokesperson about a concern or need.
2. The spokesperson collects all concerns of all patients on that shift regarding the concern or need and informs the PAC representative.
3. The PAC representative holds a meeting of all spokespersons, allowing them to share common concerns. (If a meeting is not possible, the PAC representative may canvass the spokespersons and gather information in this way. Also the staff coordinator may co-facilitate meeting.)
4. The PAC representative and staff coordinator meet with the administration to address the issues and take whatever action they need to solve patient concerns.

These are not the only routes that communication may follow. It’s up to everyone to be creative and open to making the system work.

How to Begin the Program – a Step by Step for PAC Representative

You can use your own approach or you can use the following approaches to begin the program:

• A sample memo which you can use "as is" or change as you like is in the "Tools" section. If you get a reply (yes or no), be sure to acknowledge with a memo or meeting.
  

• If you do not get a reply within three weeks, call the administrator. Make sure he or she received your memo. Ask for a response within the next two weeks.
  
• If your second attempt to get support fails, inform the Patient Services Department at the Network office. Send Memo to Network in "Tools" section.

• At this time please send the Memo to Network (found in the "Tools" section).

• Both the PAC representative and alternate should participate in this meeting

• Determine the best ideas, and talk about implementing them.

• Talk about how to recruit spokespersons. Identify some patients that you feel will be good in this volunteer position.
  
• You will have some basic needs locally, so identify these areas and come up with ways to approach them. Possible needs: copy work, bulletin board, and suggestion box. Usually the facility will be able to help; it’s just a matter of being flexible and resourceful.

• Ask for their recommendations for volunteer spokespersons. Suggested memos are in the "Tools" section.

• Describe the Client Communication System program and your ideas.
  

• Give them a copy of "Guidelines for Spokespersons" and the "Client Communication System Program Outline."

• Be sure they understand their responsibilities.
  
• Let them know how they can contact you -- by phone, mail, mailbox, etc.

• Remember that you can start the program even if you don’t have all the volunteers that you may need and that you can start small. For example, your first activity may be getting all patients on the Renal Outreach mailing list.

• Inform other patients who you are and remind them of the Client Communication System program.
  
• Inform them of their spokesperson.
  
• Set up a bulletin board, suggestion box, etc.

• Conduct your first activity.

• Meet regularly with your staff coordinator (at least monthly) and together meet regularly with the facility administration (at least every two months).

• On an on-going basis, keep spokespersons informed using memos or individual or group meetings. They in turn will share the information with the patients they represent. Share information such as facility and Network news, program progress and successes, meeting dates, etc. on a regular basis. The flow of information starts with you and your staff coordinator.

Program Responsibilities

To function successfully each partner to the Client Communication System must share in the responsibilities of making the program work. The following are suggested contributions each partner can make to make sure that the program gets off to a good start and is properly maintained.

A. Facility

1. Appoints a Staff Coordinator to promote, support and co-manage the Client Communication System;
2. Provides a mailbox and bulletin board space to promote PAC and CCS activities;
3. Provides a meeting room for scheduled meetings;
4. Provides materials, such as copies of letters, meeting agendas, summaries of meetings, etc.;
5. Provides administration personnel to attend CCS meetings when requested.

B. Staff Coordinator

1. Works with the PAC representative and the staff of each shift and modality to recruit patients to serve as Spokespersons;
2. Along with the PAC representative maintains a current listing of the Representative, Alternate, and Spokespersons, including their addresses and phone numbers;
3. Meets with the PAC representative every other month (or as needed) to share information or to discuss issues related to the facility, patients, and/or the Network.
4. Working with the PAC representative co-facilitates the CCS and general patient meetings;
5. Working with the PAC representative completes the meeting documentation form and provides a copy to the PAC representative and to the administrative staff.

C. PAC Representative

1. Serves on the Network's Patient Advisory Council and works to implement the Client Communication System.
2. Attends the Network's Patient Advisory Council meetings/workshops to represent the patients of the facility;
3. Supports Network projects by responding to requests for input as well as sharing Network materials and information with others at facility;
4. Gathers information from Shift/Modality Spokespersons regarding patient issues, concerns, suggestions, etc.;
5. Meets with the Staff Coordinator on a regular basis to share information or to discuss issues related to the facility, patients, and/or the Network.
6. Attends and co-chairs the Client Communication System meetings;
7. Attends and co-chairs the CCS meeting and shares the CCS Meeting Report.
8. Attends and co-chairs general patient meetings.

D. PAC Alternate

1. Attends the Network PAC meetings with the PAC representative when possible or as a substitute for the Representative, if needed;
2. Attends CCS meetings;
3. Assists the PAC representative in Network and Client Communication System activities as needed;

E. Spokespersons for Hemodialysis Shifts and Treatment Modalities

1. Communicates and encourages patients to be actively involved in the facility;
2. Provides patients with a way to reach him/her (mailbox, phone number, etc);
3. Distributes Network information and makes educational materials available to patients;
4. Attends Client Communication System meetings when requested.

Some Helpful Hints

Some Suggestions for Communication for PAC Representatives

The following suggestions may help you to communicate effectively with staff and other patients:

To get yourself known as the PAC Representative:

• Use your PAC representative business cards.

• Send a memo to patients, introducing yourself. See the "Tools" section of this guidebook for a suggested memo.

• If your facility already has a patient newsletter, write a column introducing yourself.
  
• If your facility has patient support meetings, arrange to be a speaker at one of the meetings. Introduce yourself and describe the Client Communication System program.
  
• On an on-going basis, introduce yourself to new patients in your facility.

To distribute information set up a bulletin board. Post information such as:

• Notices of up-coming meetings and workshops.

• Descriptions of new books and pamphlets that are available from The Network, etc.

• A copy of the latest Renal Outreach newsletter and information on how to order.

• A copy of the latest facility newsletter.

To make it easy for others to reach you, have a mailbox at the facility - this could be as simple as a manila envelope kept at the nurse's station.

To make it easy for everyone to communicate their thoughts and ideas have a suggestion box and encourage people to use it - even if anonymously. Send out a memo (see "Tools") explaining its purpose and how to use it.

How to Have a Successful Small Meeting

Meetings whether one-on-one with your staff coordinator and/or together meeting with the facility administrator are formal gatherings. To have a successful meeting, you must be organized and some preparation will be required. The following are some basics to help you prepare for a favorable and productive meeting.

Before the Meeting

1. Set up the time and place of the meeting.
2. Notify everyone who needs to be a part of the meeting of the date and time. For example, at times the Alternate may meet with you and the staff coordinator or the facility administrator.
3. Develop an agenda and work with the staff coordinator to finalize it. Even if you are meeting with the staff coordinator, an agenda helps you keep on track and make sure that everything you need to cover is covered.
4. Make sure that you have gotten all of the relevant information from spokespersons or patients regarding any agenda item.
5. Decide who will take minutes of the meeting. Minutes are a good way of keeping track of what was discussed and of any outcomes from the discussion. Also if you are planning an activity, minutes are a good way of keeping track of what needs to be done by whom and when.

During the Meeting

1. Be sure to stay on track.
2. Make sure you are heard; express your concerns and ask questions.
3. Make note of action items and make sure they are included in the minutes.
4. Be open to suggestions and comments.
5. If some items are not covered or cannot be resolved hold off on them for further discussion.

After the Meeting

1. Share a summary of the meeting with the spokespersons so that they can report results to patients on their shift. Use a memo form from the "Tools" section or any other appropriate means.

How to Have a Successful Large Group Meeting

You and your staff coordinator may want to have general meetings with spokespersons and/or patients from time to time. For example, you may want to have periodic meetings with spokespersons as a way of maintaining the program and sharing information. Also you may want to have one for everyone at the facility to describe the Client Communication System program. Also, you may want to have one for all patients to discuss issues that have come up over the past several weeks/months and what solutions have been recommended or attempted.

Meetings take a lot of planning to be successful. Here are some suggestions:

Before the Meeting

1. Work with your staff coordinator to set up the time and place of the meeting.
   Make reservations for the room.
2. Notify all spokespersons of the date and time. Ask them if they have any items that you should discuss at the meeting. Be sure to give them a due date for that information.
3. Ask the spokespersons to notify the patients of the meeting. Ask them to submit items to the meeting for discussion. Give them options, for example, giving items to the spokesperson or placing them in the suggestion box. Be sure to give them the due date for proposing agenda items. For the first meeting notice consider sending a memo.
4. Post the date and location on the bulletin board.
5. Also determine if you should invite others to the meeting; invite them personally.
6. Develop an agenda and work with the staff coordinator to finalize it. Include information you received from the Network, staff, or spokespersons. Make sufficient copies of the agenda for those who attend.
7. Decide who will make the presentation. Do you need a master of ceremonies and a separate speaker for each agenda item? Or can one person do it all?
8. Decide who will take minutes of the meeting.
   Decide if there will be refreshments. If so, make appropriate plans.
9. Decide if you will need any audio/visual equipment.
10. Decide if you will have handouts or resource materials for participants. Make sufficient copies or order materials at least one month in advance.

During the Meeting

1. Be sure someone is taking notes of the discussion especially actions recommended for each agenda item.
2. Help everyone be heard. Listen to patients when they are expressing concerns or asking questions. If a speaker cannot be heard, restate these concerns and questions (preferably into the microphone, if one is available). By doing this you help to:

• Make sure you have correctly understood the question or comment. (ask for correction or confirmation from the speaker that you got it right);
• Make sure all patients have heard the question or comment.Be open to suggestions from the floor.
• Brainstorm and list all ideas, without labeling any as good or bad.
• Take note of action items and make sure they are included in the minutes. Together (patients and administration) decide which items to put into action. List person or persons responsible for follow-up.

After the Meeting

1. Working together, the PAC representative and staff coordinator, complete the meeting report. See "Tools" in this guidebook.
2. Send a copy of the meeting report to all spokespersons and encourage them to share the results of the meeting with the people on their shift.

How to Use the Tools Section

Several of the forms and memos that we suggest you use are in the "Tools" section of this guidebook. Make copies of them as needed. Certainly you are welcome to write and use your own or adapt the ones provided for you.

The Client Communication System logo is on one exhibit page, reproduced in several sizes. Make copies to label your bulletin board, suggestion box, etc.

How to Use the Handouts Section

Several documents such as individual CCS position guidelines have been included in this section. Make copies of them as needed. For example, you may wish to provide spokespersons with a copy of the guidelines for spokespersons, the Network patient rights and responsibilities statement and grievance proceedure.

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