By Bill Peckham
This is the first official Sharp End of the Needle Talk - SEN Talk - that I will also publish as a podcast (assuming I figure out how). As an active advocate, volunteer and donor for and to kidney research I've had many conversations over the last 15 years that informed my advocacy and made me a more committed supporter. My goal with SEN Talks is to bring those conversations online.
Dr. Ann O'Hare is a professor of Medicine at the University of Washington, a researcher at the Kidney Research Institute and a practicing nephrologist at the Veterans Administration. I attended a recent Grand Rounds that she presented following on her AJKD article published last month Patient-Centered Care in Renal Medicine: Five Strategies to Meet the Challenge.
Patient-centered care and patient-centered research are seen as a way forward, a way of providing people who need dialysis "better care", which sounds good but what do we mean by "good care"? What makes care "better"? For this to work effort has to come from both directions, from providers and from the sharp end of the needle, from patients. It occured to me after we talked, that O'Hare's five strategies to provide patient-centered care: listening, making time, being willing to go beyond our job description, re-imagining what it means to provide “good” care, and seeing the value of relationship building could be repurposed into five strategies to receive self-centered care. Listening and relationship building are keystones to receiving self-centered care - be coachable - what other strategies should be included?
I hope this is just the first of an ongoing discussion with renal researchers and providers, how to create a more humane dialysis system both in the experience of dialysis and in the practice of dialysis. There are encouraging trends, but few people are satisfied with the provision of dialysis in the US writ large because we know it can be improved.