The third day of the ASN Kidney Week Annual Meeting included a heavy emphasis on the patient perspective of kidney disease. Three concurrent sessions on Saturday afternoon included speakers living with kidney disease. One of those sessions was the Celeste Castillo Lee Memorial Lecture, a unique lecture amongst medical society meetings. Named for a visionary member of the Kidney Health Initiative (KHI) Board of Directors,  an advocate for people with kidney diseases, and founder of the KHI Patient and Family Partnership Council, the lecture elevates the patient perspective during the kidney community’s most prestigious meeting.

This year’s lecture was delivered by Derek Forfang, a well-known leader in the kidney community and newly chosen member of the KHI Patient and Family Partnership Council. Drawing on 30 years living with kidney failure and Type 1 diabetes, Mr. Forfang discussed how the dialysis experience, care plans, and measurements can be more people centered.

He explained that true people-centered care is a critical culture shift that can improve patient outcomes and quality of life. The current approach to healthcare measurement in the dialysis clinic setting is not patient-centered, and primary measurements used by payers are driven by variables that are clinical in nature, rather than patient oriented. This approach leaves the person on dialysis unengaged and feeling like they are just moved in and out of treatments – like a victim of their disease. There are many factors that contribute to this environment, including factors that are built into how dialysis clinics are operated. The result of this environment is that patients often feel like they must live dual lives and that dialysis directly impacts their identity. Mr. Forfang emphasized that patients feel boxed into a system that does not respect the whole person.

This does not have to be the case for people with kidney failure. Mr. Forfang has worked with the University of North Carolina Kidney Center to create My Dialysis Plan a new people centered method to align clinical measures to patient needs and develop measures to drive patient care. This plan is built to work in the current clinical context. The care plan shifts the treatment paradigm away from being problem centered to patient priority centered. Additionally, Mr. Forfang observed that payers at the Centers for Medicare and Medicaid Services are beginning to pivot their payment methodology to emphasize outcomes rather than measuring processes.

During his session, Mr. Forfang outlined four ways for dialysis clinics to provide more people-centered care:

• Recognize that kidney disease is a journey,
• Acknowledge that identified needs should drive care,
• Take time to understand what matters most to each individual,
• And understand that what matters most to people with kidney failure will change over time.
   

Mr. Forfang believes that patient-centered measurement is catching on and a cultural change is happening that will improve the lives of people with kidney failure.