Becoming a Patient Facility Representative
The Patient Facility Representative Program is a volunteer program focused on improving the health and safety for kidney patients. IPRO End Stage Renal Disease (ESRD) Network 9 is funded by the Centers for Medicare and Medicaid Services (CMS) to improve the quality of care provided to individuals with ESRD in Ohio, Indiana, and Kentucky. CMS and the Network believe that the patient is the most valuable person on the healthcare team. Your volunteer efforts are important in helping others with kidney disease to improve their quality of life and safety.
CMS has asked that he Network focuses on key areas which studies have shown are important for improvement in the well-being of patients with kidney disease. Our projects include helping to reduce infections and long term catheters, promoting the use of home dialysis, helping patients get on the transplant waitlist, and supporting patients who would like to go back to work.
As a Patient Facility Representative (PFR), part of your role is to provide suggestions on the best ways to educate and support other patients by sharing resources we provide with patients and then letting us know which materials and approaches worked best for you to improve educations on these important topics. We also look for your input on information or education guides we should created to assist patients in learning about these areas.
What will I be expected to do as a PFR?
The As a Patient Facility Representative you will provide a link between patients, the Network and their facility staff promoting communications and understanding. You will act as an active member of the healthcare team within the facility to:
- Encourage fellow patients to be involved in their healthcare.
- Share with fellow patients information provided by the ESRD Network and Facility.
- Participate in facility improvement initiatives and provide information to the quality team on your work with other patients.
- Collect and provide the Facility and Network with ideas and suggestions from other patient's.
- Assist the facility in developing support groups for education and adjustments to dialysis.
- Attend a facility quality meting and share observations and suggestions to improve from your experience working on these quality activities.
- Attend PAC meetings and conference calls when available.
- Participate in local or national committees focused on Quality Improvement Activities.
Who can be a PFR?
Patients/caregivers/family members who:
- Interact easily with other patients and staff members
- Are interested and involved in their care
- Are willing to represent their community and share their ideas
- Could fill an advocacy role or enjoy education
- Have access to phone, email and if possible the internet.
How Will I Learn about my Role?
Please review this Patient Facility Representative Guide the Network has developed it will give you a general overview and some information on how we will communicate with you as you begin your work.
Improving quality within a facility takes a team and by becoming a PFR you have become a member of that team. The facility you are working within should have a project leader for the work that is being done and it is very important that you both spend time talking together to plan and support the efforts to improve. Your facility project lead can provide you copies of materials, assist you with setting up lobby day, help you to plan working with your project lead will be important to your success and learning.
We at the Network are also planning to check in with you and offer ongoing education and support. If you need assistance beyond what your facility can provide we are here to help. Please feel free to contact us at 1-844-819-3010 to receive additional training and guidance.
What is my role and what tools will I use?
Each PFR has a role that is a little different than another's based on the focus of the improvement work the facility is working on. Below we have outlined examples of activities you may do to help patients in your facility and the tools we have provided for you to use.
Example activities and tools used to help patients get on the Transplant Waitlist:
- Distribute NCC materials on transplant found here.
- Provide interested patients with contact information for the local transplant centers
- Distribute this Network Transplant Criteria information guide.
- Provide this National Kidney Foundation Peer Mentor Information
- Plan an educational bulletin board or lobby day
Example activities and tools used to reduce infections or the use of Long Term Catheters:
- Educate on the signs and symptoms of infection and sepsis using these educational materials
- Perform monthly audits (hand washing, patient access and hand hygiene, and surface disinfection) and report the findings to the facility manager.
- Provide a report of your audit findings in the facility quality meeting.
- Update the Days Since Last Blood Stream Infection Poster
- Host an lobby day focused on infection prevention education using the CDC Core Intervention poster
- Promote education on access maintenance and permanent access placement by using the materials listed below.
Example activities and tools used to promote Home Dialysis Therapies:
- Distribute this Know the Facts About Dialysis Choices guide
- Direct interested patients to Home Dialysis Central, a website with unbiased information regarding home dialysis
- Direct interested patients to Home Programs in the area, providing contact information.
- Provide this National Kidney Foundation Peer Mentor information
- Assist with planning a facility awareness activity i.e. an educational bulletin board or lobby day
- Share this resource aimed at uncovering myths about home dialysis therapies
Example activites and tools used to help patients get back to work:
- Distribute these educational resources on vocational rehab.
- Have a word search day at your clinic to help patients learn the terms associated with home dialysis using this tool
- Provide the local contact information for vocational rehabilitation services.
- Start an informal support group with patients who work sharing their experience while on dialysis.
- If a patient is concerned about going back to work share this myth versus fact sheet
How do I get Started?
Talk with your facility manager or charge nurse about the Network quality improvement activity they are focused on addressing. Offer your assistance and discuss how you could help. Fill out this PAC application and have your facility representative fax it into us. Once we receive your application we will send you a packet of the materials to use and will add you to our communications to help support and develop your work as a PFR.
Have more Questions?
Contact the Network at 1-844-819-3010. We would be happy to help.
To become a Ohio River Valley PAC Member, please contact:
IPRO ESRD Network of the Ohio River Valley
Network 9 (IN,KY,OH)
Andrea Bates, LSW, MSW
Patient Services Director
Laura Rodriguez-Carbone, M.P.A.
Community Outreach Coordinator