Patient Advisory Committee

Transcription

1 IPRO End-Stage Renal Disease Network Program Patient Advisory Committee esrd.ipro.org

2 Congratulations on your new role as a Patient Advisory Committee (PAC) participant, and welcome to the IPRO ESRD Network Program PAC. As a Patient Advisory Committee (PAC) participant, you will be an invaluable link between patients, unit staff, and Network staff, giving you the opportunity to work together with each of these groups. Please feel free to reach out to your Network contact and your area PAC Chair with any questions, comments, or concerns that you may have. Remember, you can tailor your role as a PAC participant to your desired activity level. The most important part of your role is for you to know what resources are available to you, and for you to be able to share information about these resources with your peers. The more involved you decide to become, the more you will feel encouraged and energized to empower others. Together, we can make a difference in the experience of living while on dialysis! During your time as a PAC participant, you ll receive USPS mailings and s (if you have access to e- mail) from the Network on various topics, so please keep your Network Community Outreach Coordinator (COC) informed of any address or phone number changes and, if you use , please send us your address. The Network is a resource for publications and educational materials. As a PAC participant, we encourage you to familiarize yourself with the Network, our publications, our website (if you have access), and our resources. The Network produces two patient-oriented publications. One is a quarterly e-newsletter, Kidney Chronicles available in both English and Spanish. Another is a newsletter, PAC Speaks, written by PAC participants that is distributed bi-monthly. Please share our publications with your fellow patients at your facility. If you need additional copies of anything, we encourage you to visit or contact your Network directly. Your Network Community Outreach Coordinators are available to help you at any time. Please contact them with any questions or concerns you may have, or if you need guidance. They re listed on the back cover of this booklet. Thank you again for volunteering your time and energy to help provide a link between patients, unit staff, and the Network! This is an amazing opportunity to help everyone affected by ESRD, and we are looking forward to working with you. 2

3 About IPRO IPRO is a non-profit organization that works with government agencies, providers and patients to implement innovative programs that bring policy ideas to life. For over 30 years we ve made creative use of clinical expertise, emerging technology and data solutions to make the healthcare system work better. About the IPRO End-Stage Renal Disease (ESRD) Network Program The IPRO ESRD Network Program 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 These four Networks, managed by IPRO, are part of the 18 ESRD Network organizations under contract with the Centers for Medicare & Medicaid Services (CMS). The IPRO ESRD Network Program is dedicated to assisting dialysis and renal transplantation centers in establishing and maintaining high standards of care for ESRD patients. The IPRO ESRD Network Program is fully com - mitted to promoting and achieving the goals and vision of the ESRD Network Program, as well as providing support to patients and providers throughout the 13 states served by the IPRO ESRD Network Program. The mission of the IPRO End-Stage Renal Disease Network Program is to promote healthcare for all ESRD patients that is safe, effective, efficient, patient-centered, timely, and equitable. 3

4 About the Patient Advisory Committee The Patient Advisory Committee (PAC) is an organi zation of patients and/or family members who volunteer their time to represent the Network in their dialysis or transplant unit, as well as repre senting their unit to the Network. Each of the four IPRO ESRD Networks has a dedicated PAC that works to support the unique needs of the Network s service area. Tier 1: PAC Members include those individuals who are interested in learning about becom ing better advocates for their care. This level of involvement is ideal for those who are interested receiving updates from the Network about educational seminars and learning more about ESRD. Tier 2: PAC Representatives provide a link between patients and unit staff, and promote positive communication among patients, staff, and the Network. Tier 3: PAC Chairs support PAC Representatives in their region and are available to answer questions and give advice as needed. Roles and Responsibilities Individuals who participate in the PAC are ESRD patients or family members/care partners of patients who are treated at, or consider themselves associated with, a specific dialysis unit or transplant facility. They must have an interest in improving the quality of life of renal patients and be willing to exchange information and ideas with patients and staff members. PAC participants are encouraged to attend facility and regional meetings and/or participate on conference calls as often as possible. Patient Advisory Committee Structure PAC participants can participate as much or as little as they like, based on their abilities and lifestyles. The Network has three distinguished tiers of involvement created to best fit the needs of the diverse renal community. The three tiers of PAC membership offer opportunities for patients/family members/care partners to participate at a level at which they feel most comfortable. 4

5 Participants may increase their level of involve - ment at any time during their membership. We under stand that life happens and individuals may have to switch between the different roles due to health or family circumstances. Having tiered levels of involvement allows patients and families to participate at a rate that best suits their needs. We welcome and encourage patients/ family members/care partners to explore all levels of PAC. Tier 1: PAC Members PAC Members include those individuals who are interested in learning about becoming better advocates for their care. This level of involvement is ideal for those who are interested receiving updates from the Network about educational seminars and learning more about ESRD. We encourage our PAC Members to Take an active role in their healthcare team Educate themselves about renal disease and their treatment options Become familiar with the role of the ESRD Network Share this new information with family and friends Attend webinars and educational sessions held by the Network and our partner agencies Take advantage of additional training to increase level of involvement with the Network. At any time, PAC Members may consider increasing their engagement level. Opportunities may include becoming a PAC Representative, a Peer Mentor or a Patient Subject Matter Expert (SME), and participating on regional and national calls and conferences. Tier 2: PAC Representatives PAC Representatives provide a link between patients and unit staff, and promote positive communication among patients, staff, and the Network. Representatives also Encourage fellow patients to be involved in their healthcare. Empower patients to freely communicate with the other members of their healthcare team Share with fellow patients information provided by the ESRD Network Collect and provide the Network with ideas and suggestions from other patients Attend PAC meetings and conference calls when available Participate in committees focused on Quality Improvement Activities Must be nominated by their facility Must complete training to become a Certified Peer Mentor. 5

6 Tier 3: PAC Chairs PAC Chairs support PAC Representatives in their region and are available to answer questions and give advice as needed. This level of participation in the PAC requires that the individual serve as a PAC Representative for at least one year and includes activities such as the following: Participating and providing a patient perspective in local and national Quality Improvement Projects Coordinating of social or educational functions aimed at increasing awareness of ESRD Providing feedback and participating in our patient focused newsletter for the region Starting regional, or local support groups Coordinating regional conference calls More Information about the Role of PAC Representative Each of the four IPRO ESRD Networks has a dedicated PAC that works to support the unique needs of the Network s service area. PAC Representatives play a large role in supporting the Network as they Share information about Network programs and resources with other patients. Communicate with patients in the unit to identify concerns, ideas for unit improvement, and potential problems with staff or other patients Work with facility administrative staff to develop social activities that promote a sense of community in the unit. Examples of this type of activity include n n n n Organizing a bus trip or a picnic, Arranging visits to hospitalized patients, Setting up a staff person of the year award, giving fellow patients an opportunity to vote each year for a staff member who deserves to be recognized, and arranging a ceremony to acknowledge the winner, or Organizing patient support groups. Regularly meet with facility administrative staff to help them better appreciate the needs of patients and to support a team approach among patients and staff members in an effort to address concerns and improve quality of care for all ESRD patients being treated at the facility. Assist with the orientation of patients new to the unit. Oftentimes, new patients are over - whelmed with information provided by professionals, yet will understand what is being said by another patient. The purpose of this Committee is for the Network to provide a safe place for patients and families to give their perspectives of living with ESRD. We encourage people to be involved in their own lives, their community, and at national levels to provide valuable insight on how the facilities and the Networks can improve care for ESRD patients. 6

7 Tips for Success Practice Professionalism with Facility Staff and Peers As a PAC Member or Representative, your activities are limited to PAC-related matters, which should be approached in a thoughtful, respon sible manner, always with the cooperation and knowledge of the social worker or other involved facility staff. If you would like to meet with a member of the staff and do not have a regularly scheduled meeting time, request an appointment. It is important you respect the work schedules of your social worker and facility staff. Keep in mind that staff members have many tasks in addition to assisting PAC Members and Representatives. In addition, please remember to have respect for, and be sensitive to, your fellow patients PAC Don ts 8 Do not compare your own treatment and its results with the experiences of other patients. 8 Do not make demands; instead turn them into requests, suggestions, or questions. 8 Do not criticize a patient s physician or healthcare team in any way. 8 Do not imply doubt or negativity concerning details of a patient s treatment plan. If the patient has concerns about their treatment plan refer them to their physician, nurse, or social worker. Cultural differences Spiritual or religious beliefs Individual feelings Personal views Know Your Limitations and Boundaries As we have mentioned previously in the Roles and Responsibilities portion of this manual, one of your obligations is to represent the patients in your facility to the Network and facility staff members. You can provide comfort and support simply by listening in a non-judgmental way and sharing personal experiences in an honest and positive manner. However, you must refrain from giving medical advice of any kind or commenting on specific orders of medical professionals. Instead, try encouraging patients to talk with their healthcare team and to have a positive, confident relationship with their physicians and other care providers. Most importantly, respect yourself and others. Maintain a calm, dignified, non-confrontational manner that will invite mutual respect between you, your fellow patients, and staff. 7

8 Contact your Network s PAC Coordinator for more information. NETWORK 1 Community Outreach Coordinator 1 (866) 286-ESRD (3773) IPRO ESRD Network of New England 1952 Whitney Avenue, 2nd Floor Hamden, CT NETWORK 6 Community Outreach Coordinator 1 (800) IPRO ESRD Network of the South Atlantic 909 Aviation Parkway, Suite 300 Morrisville, NC NETWORK 2 Community Outreach Coordinator 1 (800) 238-ESRD (3773) IPRO ESRD Network of New York 1979 Marcus Avenue Lake Success, NY NETWORK 9 Community Outreach Coordinator 1 (844) IPRO ESRD Network of the Ohio River Valley 3201 Enterprise Parkways, Suite 210 Beachwood, OH 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 Number: HHSM C. esrd.ipro.org