“I Champion Health IT…for My Mom.”

Coping with Cancer Taught Lee Stevens the Value of Health IT

Lee Stevens' mother was diagnosed with acute myelogenous leukemia in 1990. For five years, he watched her struggles navigating the world of medicine and coping with cancer in a paper world. Today, it is both his job and his mission to help create a future where families have access to the data and tools they need to take charge of their health care.

"In 1990, there was no Internet, no online source of reliable medical data, no good way to track and store your own health information."

My mother's cancer came up like this: One day she was cycling 20 miles; the next day, she couldn't stand up.

That's how acute myelogenous leukemia works. One day you're fine, the next you're coping with cancer. It's like overnight a switch goes off in your body, and all of a sudden you're incapacitated. You have no energy. Basically, your blood is no good. And back in 1990, when my mother was diagnosed, the disease had almost a zero survival rate.

My mom was fascinating. She was from Lumberton, NC, the small southern town where I grew up. She was born and raised there, and all of her family still lived there. She volunteered to do pretty much anything you could volunteer to do. She adopted every dog that was about to be put down. I can’t imagine a better way to grow up. She was just this extraordinarily vital person. She was a cyclist, and she cycled 20 to 25 miles a day, right up until the day she was diagnosed with cancer.

I was away at college when I got the news. My aunt called me from the hospital and told me to come home. “Bring clothes,” she said. “You’re going to be here for a few days.”

I got home and the doctors weren’t optimistic. They told us from the beginning that the prognosis was grim. The next day, we transferred her to Duke University Medical Center for treatment.  

The first thing my mother did when she got set up in her room at Duke was send me out to buy a medical textbook. She wanted to learn everything she could about the disease she had, so that she could be informed, so that she could be in control. She read the textbook, and she immediately started crying.

Coping with Cancer in a Paper World

The problem with reading about your cancer in a textbook is that by the time the book goes to print, the information is outdated. In 1990, there was no Internet, no online source of reliable medical data, no good way to track and store your own health information. But in spite of that, my mom said, “You know, I’m going to take charge of this, and I am going to try to live as long as I can.” So she just jumped into it. Taking charge and maintaining some level of control was the most important thing to her, and as a family, we tried to find ways to help her do that.

We quickly realized because of the potential for many mishaps in any hospital, and our desire to make treatment as effective as possible, that someone had to stay with her around the clock. We wanted to be careful. We made notes on every single treatment she received. My father, brother, sister, or I were there 24 hours a day, writing every single thing in a notebook. There was no other way to track it, because nothing was electronic.

"If we had electronic health records, not only would her life have been dramatically better, but also the process would have been significantly easier for my entire family."

I was in college at the time and my sister and brother were in high school. My dad owned a small business. You can’t know until you’re going through it what a dramatic undertaking it is to help someone coping with cancer get through the treatment for the type of leukemia my mother had. All of us gave up a lot of our lives to focus on my mom. We were of course glad to do it, but it was hard for everyone.

After two years of chemo and horrible quality of life, my mother decided to undergo a bone marrow transplant, which had to be performed at a different hospital, far from home. We literally hauled her medical records in plastic bags because there was no other way to get all that information to the new hospital. For five years, we managed her records and care with notebooks. She was able to survive for five years because we did that.

Working Toward a Better Future: Empowering Patients with Health IT

My mom died in 1995, and 16 years later it is both my job and my mission to make sure that other families don’t have to experience the kind of pain that we went through.

I am obsessed with health care, and I love health information technology (health IT). I now work for the Office of the National Coordinator for Health Information Technology (ONC) as the program manager for the State Health Information Exchange (HIE) program.

I believe in health IT because I saw firsthand how hard it was to manage my mother’s care in a paper world. If we’d had electronic health records, not only would her life have been dramatically better, but also the process would have been significantly easier for my entire family. My mother would have had so much more confidence in her care if she’d had something like an iPad to access her patient portal that she could look at every day. And the peace of mind that came with knowing that all of my mother’s information was being properly tracked would have saved my family the agony of trying to help her feel comfortable and like she was in control.

I also believe that health IT can help prevent the kinds of medical errors we worked hard to avoid, eliminating the need for families to keep a bedside vigil with a notebook, the way we did. And when you’re dealing with a catastrophic disease like cancer, especially in a hospital setting, you are seen by multiple doctors, multiple nurses, multiple specialists. When my mother was ill, it was hard to coordinate her care. Health IT can change that.

At Duke, my mom’s primary oncologist, Dr. Joseph Moore, came in almost every day to give her a wrap up of what had happened that day. That gave her a level of comfort that she wouldn’t have had otherwise. Because she knew what was going on, she was able to relax. He was incredible.

But not every doctor is able to do that. And if she’d had all of that information electronically, she would have been more comfortable as she was coping with cancer.

Health IT has the power to give patients and families the control my family struggled to maintain. That, for my mother, would have been the most important thing.