The End Stage Renal Disease National Coordinating Center (ESRD NCC), in partnership with the Kidney Patient Advisory Council (KPAC) of the National Forum of ESRD Networks, is pleased to announce the release of the Patients Speak video.
The Patients Speak video was inspired by a request for the KPAC to present a meaningful and patient-centered session at the Forum’s 2015 Creating a Culture of Quality Conference. The KPAC collected a sample of comments submitted by ESRD patients, reflecting on their lives with dialysis. During the conference, these thoughts and experiences were read aloud by a panel of KPAC representatives and recorded. “The reception was incredible and better than I imagined!” said Maggie Carey, KPAC Chair.
The KPAC received requests from several organizations asking for the recording of the patient panel. “When the ESRD NCC offered to help us turn this into a video, it was like being handed a gift,” said Maggie. “Everyone involved believed in this project, was touched by the patients’ experiences, and saw what it could become.”
Developing the Patients Speak video was an invaluable opportunity to align around patient experience and quality of care. “Many dialysis patients, especially in-center, sit in a dialysis chair for 12-15 hours a week,” Maggie said. “They have many thoughts that they may never share with the staff or their families. We wanted those thoughts to be heard. We wanted to share the true range of feelings and emotions that patients experience.”
The Patients Speak video can now be viewed by clicking here.
The ESRD NCC extends its sincerest gratitude to the Forum and KPAC for this opportunity to collaborate. The KPAC is a Forum Council that is comprised of patient representatives from ESRD Networks across the country. Their mission is to support and advocate on behalf of the ESRD Networks and to improve the quality of care for patients with renal disease. To learn more about the Forum of ESRD Networks please visit their website.
This publication was developed under Contract Number HHSM-500-2013-NW002C, titled “End Stage Renal Disease National Coordinating Center (ESRD NCC),” sponsored by the Centers for Medicare & Medicaid Services (CMS), Department of Health and Human Services. The contents presented do not necessarily reflect CMS policy.