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esrd.ipro.org
IPRO End-Stage Renal Disease Network Program
Patient Advisory Committee
March 2019
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About IPRO IPRO is a non-profit organization that works withgovernment agencies, providers and patients toimplement innovative programs that bring policyideas to life. For over 30 years we’ve madecreative use of clinical expertise, emergingtechnology and data solutions to make thehealthcare system work better.
About the IPRO ESRDNetwork ProgramThe IPRO End Stage Renal Disease NetworkProgram includes four ESRD Networks:
Network 1: ESRD Network of New England
Network 2: ESRD Network of New York
Network 6: ESRD Network of the South Atlantic
Network 9: ESRD Network of the Ohio River Valley
The mission of theIPRO End-StageRenal DiseaseNetwork Programis to promotehealthcare forall ESRD patientsthat is safe,effective, efficient,patient-centered,timely, andequitable.
These four Networks, managed by IPRO, arepart of the 18 ESRD Network organizationsunder contract with the Centers for Medicare &Medicaid Services (CMS). The IPRO ESRDNetwork Program is dedicated to assistingdialysis and renal transplantation centers inestablishing and maintaining high standards ofcare for ESRD patients.
The IPRO ESRD Network Program is fully com -mitted to promoting and achieving the goalsand vision of the ESRD Network Program, aswell as providing support to patients andproviders throughout the 13 states served bythe IPRO ESRD Network Program.
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About the Patient AdvisoryCommitteeThe Patient Advisory Committee (PAC) is anorganized group of patients and/or familymembers who volunteer their time torepresent the Network in their dialysis ortransplant facility, and also represent theirfacility to the Network. Each of the four IPROESRD Networks has a dedicated PAC that worksto support the unique needs of the Network’sservice area.
Patient Advisory CommitteeStructurePAC participants can be involved in activities asmuch or as little as they like, based on theirabilities and lifestyle. The Network has threelevels of involvement created to best fit thediverse needs of the renal community.
The three tiers of PAC membership offeropportunities for patients/family members/carepartners to participate at a level at which theyfeel most comfortable.
• Tier 1: PAC Members include those individualswho are interested in learning about becomingbetter advocates for their care. This level ofinvolvement is ideal for those who areinterested in learning more about ESRD and inreceiving updates from the Network abouteducational seminars.
• Tier 2: PAC Representatives provide a linkbetween patients and facility staff, andpromote positive communication amongpatients, staff, and the Network in an effort toencourage other patients to take an active rolein their healthcare. They work with theNetwork staff and their facility staff membersto focus on key areas that are important toimprove the health and safety of kidneypatients at their facility.
• Tier 3: PAC Advisors support PAC FacilityRepresentatives in their region and areavailable to answer questions and give advice asneeded. They may also function as Networkboard representatives and members of nationalpatient groups or expert panels.
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Roles and ResponsibilitiesIndividuals who participate in the PAC areESRD patients or family members/care partnersof patients who are treated at, or considerthemselves associated with, a specific dialysis ortransplant facility. They must have an interestin improving the quality of life of renalpatients and be willing to exchangeinformation and ideas with other patients andstaff members.
PAC participants are encouraged to attend facilityand regional meetings and/or participate onconference calls as often as possible.
Participants may increase or decrease their level ofinvolvement at any time during their membership.We understand that people’s situations change andindividuals may have to switch between the differentroles due to health or family circum stances. Havingtiered levels of involvement allows patients andfamilies to participate at a level that best suits theirneeds. We welcome and encourage patients/familymembers/care partners to explore all levels ofinvolvement in the PAC.
Tier 1: PAC MembersRoles and Responsibilities
4 Take an active role as a member of theirhealthcare team
4 Educate themselves about renal disease and theirtreatment options
4 Become familiar with the role of the ESRDNetwork
4 Share this new information with family andfriends
4 Attend webinars and educational sessions held bythe Network and our partner agencies
4 Take advantage of additional training to increaselevel of involvement with the Network
At any time, PAC Membersmay consider increasingtheir engagement level.
Opportunities may includebecoming a PAC FacilityRepresentative, takingtraining to become a PeerMentor or engaging inquality improvementinterventions at their facility.
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Tier 2: PAC Facility RepresentativesRoles and Responsibilities
4 Encourage fellow patients to be involved intheir healthcare
4 Share information provided by the ESRDNetwork and the facility with fellow patients
4 Participate in the facility’s quality improvementinitiatives and provide information to thequality team on work with other patients
4 Attend quality meetings and provide thepatient perspective on quality issues to facilityleadership
4 Collect ideas and suggestions from otherpatients on the best ways to educate andsupport patients and provide this informationto facility staff members and the Network.
4 Assist the facility staff in developing supportgroups to educate patients about kidneydisease and to help them adjust to dialysis
4 Attend PAC meetings and conference callswhen available
4 Using Network surveying tools, providefeedback to the Network on their work
4 Participate in local or national committeesfocused on quality improvement activities
Tier 3: PAC AdvisorsRoles and Responsibilities
4 Participate and provide the patient perspectivein local and national quality improvementprojects
4 Coordinate social or educational functionsaimed at increasing awareness of ESRD
4 Act as a subject matter expert working onnational quality improvement projectsidentified by CMS
4 Coordinate conference calls to assist otherPAC Facility Representatives
4 Participate in and provide the patientperspective in the Network board meetingsand other Network supported meetings.
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Staying in Touch with the NetworkWe want to be sure that we are com muni cat ingwith you in a way that is most convenient foryou. We have created a few com muni cationsoptions that allow us to notify you aboutupcoming events and you to provide your feed -back. Below are examples of com mu ni cationsyou will receive based on the preferred methodof contact you provided (home phone, mobilephone, or email).
We hope you will find these communications are agood way to stay connected. If you have any concernsor would like to change your preferred method ofcontact, please call the ESRD Network.
If you agreed that the ESRD Network could contactyou by phone, text, or email, please expect to receivecommunications from the phone numbers and/oremails shown below, which vary, depending on thestate in which you live.
NETWORK STATE(S) PHONE NUMBER EMAIL
1 CT, MA, ME, NH, RI, VT 866-286-3773 [email protected]
2 NY 800-238-3773 [email protected]
6 NC, SC, GA 800-524-7139 [email protected]
9 IN, KY, OH 844-819-3010 [email protected]
Text MessageIf you provided your cell number we willreach you by text message. You can expectto see text messages from the Network likethe one below:
Hello Patient Facility Representative!The Network is holding a poster contest topromote home dialysis. We would loveyour help! Text (1) if you plan to contactyour facility lead to help with the contest.Text (2) if you cannot help.
Home PhoneIf you have provided a home phonenumber, you will receive automated calls.Calls will include survey options as well.Voice call surveys can be answered bypressing star (*) + (number choice) duringthe call.
Cell PhoneIf you add your Network phone number to yourphone contact list as the ESRD Network you willrecognize the number when we contact you.
EmailIf you have provided us with your email address, youwill receive email communication and surveys fromthe Network’s email address.
Click on the survey link and answer the questions torespond.
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As a participant in the Network PAC, you will receiveinvitations to educational presentations throughout theyear. These presentations are shown via a variety ofonline services which allow multiple people to call in andlisten to a presentation or meeting. If you are at acomputer you can also log in to see the materials that arebeing shared.
Call-in instructions are provided with each invitation.They usually require three steps. Here is a quick guide onhow to participate in these calls by telephone:
1. Dial the number
2. Enter the Access Code
3. Enter the # sign
For computer access instructions, please contact yourNetwork’s Patient Toll-Free line on the back cover of thisbooklet.
Joining Network orNational Events
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Tips for Success
Practice Professionalism with FacilityStaff and PeersAs a PAC Member or Representative, youractivities are limited to PAC-related matters,which should be approached in a thoughtful,responsible manner, always with thecooperation and knowledge of the socialworker or other involved staff at your facility
If you would like to meet with a staff memberat your facility and do not have a regularlyscheduled meeting time, please request anappointment. It is important that you respectthe work schedules of your social worker andfacility staff. Keep in mind that staff membershave many tasks in addition to assisting PACMembers and Representatives.
In addition, please remember it is important toshow respect for, and be sensitive to, yourfellow patients’
4 Cultural differences,
4 Spiritual or religious beliefs,
4 Individual feelings, and
4 Personal views.
Know Your Limitations and BoundariesAs discussed in the Roles and Responsibilitiessection (page 4) of this manual, one of yourobligations is to represent the perspective ofpatients in your facility to the Network andfacility staff members.
You can provide comfort and support simply bylistening in a non-judgmental way and bysharing personal experiences in an honest andpositive manner. However, you must refrainfrom giving medical advice of any kind orcommenting on specific orders of medicalprofessionals. Instead, encourage patients totalk with their healthcare team and to have apositive, confident relationship with theirphysicians and other care providers.
8 Do not compare your owntreatment and its results with theexperiences of other patients.
8 Do not make demands; instead turnthem into requests, suggestions, orquestions.
8 Do not criticize a patient’s physicianor healthcare team in any way.
8 Do not imply doubt or negativityconcerning details of a patient’streatment plan. If a patient hasconcerns about their treatmentplan, refer him or her to his or herphysician, nurse, or social worker.
PAC “Don’ts”
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Additional InformationPAC Tier 2: Patient Facility Representatives (PFR) Getting started as a PFR The first step is to review the information youhave received from the Network to share withyour fellow patients. Next, plan a time to talkwith your facility contacts to determine whatwould be the best approach to support patientsand the facility in quality improvement areas.Start with something small like distributingeducational resources to patients in your facilityor by completing a checklist your facility contactmay provide.
Once you have become more comfortable withthe quality improvement focus area you areworking with, consider getting involved in otherways that might reach more of your peers. Hereare some ideas on ways you can get moreinvolved:
Schedule a Lobby Dayn Pick the day(s) and times you would like to hosta lobby day. Work with your facility contactperson so they are also available.
n Distribute announcement flyers, hang posters,and talk with patients/staff about the eventbeforehand.
n Invite patients and family; be sure to invite staffmembers to answer patients’ questions.
n Make sure all materials are relevant and writtento meet the needs of your audience
n Connect with interested and engaged patientsand gather feedback on the topic beingdiscussed.
Host an Education Stationn Work with your facility contact to select a publicarea that has the space to hold and displayeducation materials
n Select materials for the station; these may befacility materials, Network materials, ormaterials from an ESRD group like NationalKidney Foundation or American AssociationKidney Patients.
n Hang signs that announce the topic area beingfeatured at the station and the date materialswill be available.
n Set up the education station and notify patientsand staff it is available
n Gather feedback on the helpfulness of thematerials as patients participate
Example of an Education Station
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Become a Patient Peer MentorA peer mentor is a patient who agrees to help toempower other patients to make informeddecisions and cope with their lives after beingdiagnosed with ESRD. Peer mentorship rolesinclude
n Improving communication among patients, careadvocates, providers and ESRD Networkcommunities;
n Supporting patients learning from one another;seeking, sharing and spreading information andknowledge;
n Developing opportunities for patients toconnect with other patients who have hadsimilar experiences;
n Helping other patients become engaged,educated and empowered;
n Serving as a role model for other patients;
n Giving patients a comfortable place to askquestions without fear of judgement.
To become a Peer Mentor you will need to viewsome online presentations that will prepare youto effectively talk with other patients, shareinformation, and support their personal choicesand preferences. Your goal is to help otherpatients gather all the information they need todiscuss their options with their care team andmake an informed decision that is right for them.
If you are interested in becoming a Patient PeerMentor, talk with your facility social worker orcontact your ESRD Network.
Attend your Facility’s Quality Meetingsn Talk to your facility contact about opportunitiesto join the facility quality meeting. At thesemeetings you’ll offer suggestions or generateideas on ways to engage patients in workingtogether to meet the facility qualityimprovement goals.
n Provide an update or report on how the workyou are doing impacts the facility’simprovement efforts.
Start a Support Groupn Talk to your dialysis social worker about startinga support group. Support groups could be inperson, in-center, online or via the phone.
n Identify the needs of patients at your facility.
n Recruit individuals interested in helping youform or be a part of the group.
n Create a goal or mission for your group basedon what you have learned from yourcommunity.
n Find a location and time that works best foreveryone to meet
Once the details are finalized, begin publicizingyour support group and inviting patients orcaregivers who may be interested.
Contact your Network’s PAC Coordinator for more information.
NETWORK 1Community Outreach Coordinator
1 (866) 286-ESRD (3773)IPRO ESRD Network of New England 1952 Whitney Avenue, 2nd Floor
Hamden, CT 06517http://network1.esrd.ipro.org
NETWORK 2Community Outreach Coordinator
1 (800) 238-ESRD (3773)IPRO ESRD Network of New York
1979 Marcus Avenue Lake Success, NY 11042
http://network2.esrd.ipro.org
NETWORK 6Community Outreach Coordinator
1 (800) 524-7139IPRO ESRD Network of the South Atlantic
909 Aviation Parkway, Suite 300Morrisville, NC 27560
http://network6.esrd.ipro.org
NETWORK 9Community Outreach Coordinator
1 (844) 819-3010IPRO ESRD Network of the Ohio River Valley
3201 Enterprise Parkways, Suite 210Beachwood, OH 44122
http://network9.esrd.ipro.org
esrd.ipro.org
This material was prepared by the IPRO ESRD Network Program, under contract with the Centers for Medicare & Medicaid Services (CMS),an agency of the U.S. Department of Health and Human Services. The contents presented do not necessarily reflect CMS policy.CMS Contract Numbers: HHSM-500-2016-00019C, HHSM-500-2016-00020C, HHSM-500-2016-00006C, and HHSM-500-2016-00009C.
v. 3 3/6/19
