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DIY Dialysis, And Other Stories About Improving Patients' Lives

This morning, Maureen Bisognano, president and CEO of the Institute for Healthcare Improvement here in Cambridge, spoke movingly about the power of storytelling to help radically change the way health care is delivered to patients.

In her keynote speech, delivered at IHI's annual forum on quality health care held in Orlando, Bisognano recounted the story of a Swedish man with kidney disease:

Christian Farman, patient advocate and nurse
Christian Farman, patient advocate and nurse

This past May, I made my annual trip to visit with our partners in Jönköping, Sweden and met a young man named Christian Farman. Christian was a mechanic at Saab Avionics and an athlete when he came down with glomerulonephritis and was placed on dialysis. The side effects of his treatment – nausea, fatigue, thirst – were taking over his life.

Frustrated he approached his nurse, Britt-Mari Banck, and made what to him was a simple and sensible request--to be allowed to administer his own dialysis. You see, Christian had researched self-dialysis and was convinced that by taking control of his treatment, he could reduce potential infections, experience more consistent care, and mitigate the side effects of treatment. He told Britt Mari, “You have to help me treat myself; I need control of my life.”

It’s easy to imagine what the usual response might be. “You can’t do that.” “That’s not how we do things here.” But Britt Mari saw something in Christian’s face...courage.

And his bravery gave her the courage to experiment...to innovate. Britt-Mari, who taught nursing students how to care for patients on dialysis used those same methods to teach Christian how to operate the equipment, and within weeks, he was administering his own treatment. And as he predicted, the side effects were lessened, and he had regained some control over his life.

As with all the best innovations, it began to spread. Christian and Britt-Mari began teaching the other patients on the unit how to manage their own treatment. They created a community of patients who no longer felt so sick, and who had fewer infections. Today over 60% of the peritoneal and hemodialysis patients at the large academic medical center in Ryhov manage their own treatment, and the clinic has a target of 75% The innovation wasn’t a patient doing his own dialysis; the innovation was a unit where all the patients do their own treatment. They give each other support and encouragement, give themselves clinically exceptional care, let themselves into the unit with a private card key, and take great pride in keeping the unit perfect.

Oh and by the way, the costs of operating this unit are 33% less, because of fewer complications.

But the story doesn’t end there. I asked the head nurse, Annett, to talk to me about how she measures effectiveness. She told me that one day, she looked out at the patients in her unit, and realized that none of them were employed. Now that their symptoms were lessened, she began to expand her view of how to measure success. Today, as new patients are admitted to her unit, she sits with them and helps them update their resumes. She brings in the county employment office once a month and the result is that now, many of her patients have found jobs and are out working.

So I asked Christian: “Did you go back to your job at Saab Avionics?” He said, “No.” And I paused, worried, but then he explained: “I’m an RN.” Christian now works in the ear, nose, and throat unit at Ryhov. Imagine a world where our patients are true partners in designing their care and where our measures of success could be as ambitious as Christian’s, Annet’s, Britt Mari’s, and the rest of the team in Jönköping.

This program aired on December 6, 2011. The audio for this program is not available.

Rachel Zimmerman Twitter Health Reporter
Rachel Zimmerman previously reported on health and the intersection of health and business for Bostonomix.

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