"Every Metric is a Person": One patient's journey from statistic to advocacy

Announcer: Asking questions, seeking perspectives, searching for answers. Algorithms for Innovation presents Impossible Problems in Academic Medicine.

Interviewer: The Healthcare industry is really, really good at innovation and new technology, but sometimes not so good at the bedside, taking care of some of the mundane details that can make a huge difference in patient care and quality. Alicia Cole is a patient safety advocate and an example of what some mistakes can do to a patient. Tell me a little about your story, it's heartbreaking.

Cole: Well, I went into the hospital in August of 2006. Never had surgery before, it was my first experience. I was an athlete. I actually trained for my surgery, I was a fully engaged patient. Trained for my surgery: sit-ups, push-ups, walking, all of those things. Made sure I had a healthy diet, I'm a non-smoker, non-drinker. So basically no risk factors.

Interviewer: You were ready to go.

Cole: I was ready to go and engaged with my surgeon and looked up my procedure to see how things should go, and went into the hospital fully confident that I would be fine. I was scheduled to be in the hospital for two days and be out. I was just having two small fibroids removed.

Unfortunately, I left the operating room with a fever, nausea, vomiting, and basically deteriorated from there, and so my two day hospital stay turned into two months, a month of which was in the ICU. Six additional trips to the operating room, had most of my abdomen either cut away or eaten away by necrotizing fasciitis. Almost had my left leg amputated.

When I left the hospital, I had an open abdomen for three years that had to be packed underneath my clothing, five months of every day hyperbaric oxygen chamber treatments at UCLA, three plus years at a wound care center. And here we are all these years later and I'm still here in physical therapy and suffering with nerve damage, adhesions, scar tissue, that kind of thing. So it's been an incredible journey. I never ever dreamed that a small routine procedure would lead to changing the rest of my life.

Interviewer: And what was the cause? What happened?

Cole: Well, my hospital, although I chose them very carefully, I looked at all the traditional rating systems, asked a few patients about their experiences there, and when the health department came in to investigate my infection, my hospital was cited for being in violation of five state laws and ten federal laws for unsanitary conditions in their operating rooms, not following their own policies and procedures as it relates to patient safety and infection prevention, and then not reporting my unfortunate outcome to the appropriate authorities as it happened.

So basically there was a system-wide breakdown at my facility that kind of led to this horrible outcome that I had. I learned from one of my ICU nurses I was his third patient with flesh-eating disease and the only one to live. So that's what lets me know that this was a consistent problem that they were having.

Interviewer: And it was just, they had the policies in place, they just weren't followed, those little details we talked about.

Cole: Exactly.

Interviewer: It, at this point might be easy for somebody to think this is an isolated incident, right? This sounds so crazy and incredible that this can't be happening elsewhere. Have you found that to be true, or is that contrary?

Cole: I was shocked when I got out of the hospital. At that time, Myspace was the big social media platform, not Facebook, and my neighbor, who, she's a twenty-something year old, and she came over and said, "Alecia, you're sending out emails and sharing your experience. You need to be on Myspace and you need to start blogging." And I was shocked, shocked, at the number of people who reached out to me. Not only at my facility was there a problem, but I learned in the greater scheme of things that hospital-acquired harm was quite a big issue, and that . . .

But what we as patients are here to do is to remind everyone that those metrics, those statistics that you're talking about, those are patients, those are mothers and fathers and children with lives. And when you alter the life of one patient, you've altered the life of their entire family, their entire community, you've changed everything. So we've really got to start looking at those metrics and adding back in the humanity.

Interviewer: What would you say if you were on a stage in front of hospital administrators, physicians? What would be the message you would preach from the mountain?

Cole: I would borrow from the Ford campaign, "Quality should be job one." Innovation is wonderful, technology is wonderful, all of those things. But at the very base and at it's root should be quality delivery of care every time to every patient.

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