Health Services Advisory Group End Stage Renal Disease Network 13

For Patients and Families

HSAG: ESRD Network 13 would like to direct your attention to their websites Patients and Families section.

Don't forget to check out their Patient Subject Matter Expert Guide (PSME) An Introduction to Being a Patient Subject Matter Expert (SME).

The Patient Subject Matter Expert (PSME) Guidebook was developed and distributed in 2017 by Network 13 to provide PSMEs with a blueprint for navigating their role and understanding the background of all the activities in which they would have the opportunity to participate. We wanted to ensure our PSMEs understood the importance of their role in the development of quality improvement activity (QIA) materials, as well as their involvement and feedback in groups such as the Network Council (NC), Medical Review Board (MRB), Corporate Governing Body (CGB), Board of Directors (BOD), and Patient Advisory Committee (PAC). We wanted to equip our PSMEs, who volunteer time and energy to help the Network, to truly reflect the patient voice in all activities. The Guide also helps new Network employees better understand the Network’s role in its partnership with the PSMEs. This valuable resource has been shared nationwide and has been adopted by both the National Coordinating Center (NCC) National Patient and Family Engagement (NPFE) Learning and Action Network (LAN) and the Kidney Community Emergency Response (KCER) LAN for use with their own patient groups.

The PSME Guide provides information on why the patient was nominated and selected to be a PSME, as well as the role they play in the Network. It explains the different groups available for them to join, participation guidelines, background and goals of the federal End Stage Renal Disease (ESRD) and ESRD Network Programs, information about the corporation, as well as the importance of the Health Insurance Portability and Accountability Act (HIPAA) and privacy of medical information. Additionally, the guide provides four pages of essential information regarding additional resources, contact information for Network staff, and acronyms. Let’s face it, the Networks use a LOT of acronyms that can be hard to decipher!  How can we expect to engage patients if they don’t understand the words and acronyms we are using? The Guide is a tool they can to as needed, throughout their tenure as a PSME. But, the Guide is just a small piece of the bigger PSME picture. Ultimately, we want the PSMEs to know that their voice is part of the big picture, and that they can truly affect change. They represent not only patients from the states in our Network, but their entire fellow patient population.

Is your Network using the PSME Guidebook yet?  If not, please consider using this valuable tool to ensure that your PSMEs understand their role and the importance of their partnership with your Network. Contact Jamie Kiburz at jkiburz@nw13.esrd.net to receive a copy to the PSME Guidebook that can be edited and tailored to your Network’s specific needs.