Kidney
question about patient voice
July 23, 2026
in Kidney
I recently had a conversation with someone about the importance of the patient voice in healthcare, specifically dealing with Chronic Kidney disease, I have found that the patient voice at times can be a struggle. To advocate for equitable care while dealing with this disease. To ask your care team to really listen is so important. With that said as I have advocated I have had clinicians tell me that most patients they try to engage with don’t seem to show interest. I would love to have the conversation with some who have dealt with that either as a patient or a clinician?
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Transplant Patient
I've encountered this quite a lot! Not kidney disease, but I do think it applies in every chronic condition. I've either had physicians upset because I'm advocating and they aren't used to it, or really shocked. I have my theory on why a lot of patients don't advocate for themselves, but I'd love to hear the other side
I only experienced this when I was on Dialysis, I have never had this issue with my Kidney doctors. My Nephrologist encouraged me to take as much control of my own health in terms of managing my health. I am the CEO of my own Healthcare, the doctors are my executives, that's how I look at It. They have the Knowledge, so we collaborate when a decision is needed, but they know the importance of active listening. My Nephrologist has great emotional Intelligence and patience with his patients.
I am very fortunate to have medical teams that listen to me. I have found that establish a relationship with my care team has made the difference. My care teams understand that even though they have the medical degree I am the first to know when something is wrong. They will move forward based on what I tell them and what they see in my labs and test they order. The hardest times I have is emergency rooms and I feel that is when they don't listen. I recently had to call the patient advocate in the hospital. I called them has a witness.. I have a strong personality so I can advocate for myself, but I refuse to be mistreated,