A Cleveland Clinic & HIMSS Event. Find out more

May 18-20, 2020 | Cleveland, OH

Chronically Ill Patient Speaks to a Disconnect in Healthcare

Swapna Kakani was diagnosed with Short Bowel Syndrome, a chronic rare disease, at birth, and for 27 years she has lived with supplemental intravenous nutrition and a feeding tube. Onstage, at the 2019 Patient Experience Summit, Swapna detailed her experiences in both the inpatient and outpatient settings, and underscored a systemic issue she found in healthcare—a lack of shared, patient-provider decision making.

In 2012, she made the difficult decision to have her dysfunctional bowel removed and as a result, was not able to eat solid food for almost three years. In those three years, despite her constant hunger and craving to eat, Swapna went back to college, graduated with top honors, and gave the commencement address. In 2014, Swapna received a small intestine transplant and she is presently doing well. She remains busy advocating for other rare disease patients. Her goal is to help attendees understand the depth of the problem—how a gap in understanding a patient's personal preference can lead to larger healthcare problems. Swapna explains what matters most to chronically ill patients. What do healthcare providers do right? What do they do wrong? Where wasn’t she included in the decision-making process that she wanted to be?



Healthcare leaders at the forefront of the global patient experience movement will address which systems, tools and insights revolutionize the role of the patient and the caregiver. We’ll explore patient perspectives and clinical considerations to understand how empathy and innovation must be incorporated as integral pillars to deliver the best clinical, physical and emotional experience in healthcare.


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