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Learning My Role in My Own Patient-Centered Care

Summary: 
We have work to improve this system with patients, putting them at the center of their care.

What started out as a bad case of the flu 14 years ago became a journey of more than 100 emergency room visits and hospital re-admissions, countless lab tests and numerous specialists. I became a case study of what happens when lack of patient engagement meets up with uncoordinated care.

The good news is I also became a case study of what happens when health care providers and patients truly communicate and work together.

Back in 2001, when I wasn’t recovering from the flu, my blood pressure was spiking into potential stroke territory. A cardiologist decided to check for a blockage, but four seconds into a cardiac catherization, I went into anaphylaxis shock.  My heart function plummeted and my blood sugars increased.

Even after I recovered enough to leave the hospital, I kept returning to the ER or the hospital because my blood pressure would yo-yo or my blood sugars would spike or I couldn’t catch my breath. It often seemed like my doctors were re-admitting me just for observation because they felt I was causing these problems.

And I do have to take some blame. I was very disengaged as a patient. I had no sense of what a red flag looked like and I didn’t keep records of my medications or my reactions to them. I didn’t know—and apparently the doctors didn’t either—that the drugs prescribed for my heart failure and my kidneys were doing battle inside me, making my condition worse.

In my appointments, my doctors would conduct standardized conversations. We didn’t talk much about my lifestyle or the complications of my treatments, like that the pills I had at home were a different dosage from the ones given to me at the hospital.

I was in and out of ERs and hospitals more than 70 times from the spring of 2001 to the summer of 2007. I hit a turning point when I was taken to the ER because I couldn’t catch my breath. That’s where I met a kidney specialist who changed how I thought about my health. He took my hand and told me that I had to help myself.

It was an epiphany. For the first time, I realized that I’ve got a role to play. I’ve been able to slash the number of ER and hospital visits as a result of that empowerment and the coordinated care I’ve received from Vidant and my primary care physician because of Affordable Care Act and pre-ACA initiatives. In the last three years, I’ve been to the ER or hospital only three times, the last being in December 2014.

I’ve taken part in Vidant Medical Center’s Heart Failure Program, which teaches cardiac patients how to take care of themselves after they are discharged. I also use our patient portal, part of Vidant’s electronic health record (EHR) system, to monitor my health by regularly posting my blood pressure numbers and weight and getting analyses on my cell phone, tablet and laptop.

My primary care physician uses the EHR system to alert me to preventive screenings and tests, that I used to forget about scheduling. My lab work is coordinated when possible to avoid duplication and hold down costs. And all my specialists and primary care providers communicate with each other so my care is smarter and healthier.

The Vidant system was already doing a lot to coordinate care for patients with certain specific diagnoses like heart failure. But now as a participant in the Coastal Plains Network, an Accountable Care Organization, Vidant is focused on coordinating prevention, chronic disease management, education and more for a larger population of patients and aligning its work with primary care physician practices.

I’m a volunteer patient-family adviser and working with Vidant to reduce re-admissions by empowering other patients to take control of their health. I worked with Vidant’s Partnership for Patients initiative, a program made possible by the Affordable Care Act, to help engage patients and families and reduce hospital re-admissions and harms.

When patients like me learn how to recognize the red flags of our health and better understand our resources, we can make smarter decisions about going to the ER or when a call to the nurse is enough.

As we think about making the American health care system better, we have to remember that it’s not enough to make changes for patients. We have to work to improve this system with patients, putting them at the center of their care.

Kim’s experience became a case study of what happens when providers and patients truly communicate and work together:http://1.usa.gov/1JxUKav

 

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