Donna Cryer is celebrating 17 years since her liver transplant, a result of her diagnosis of ulcerative colitis at a young age. Through health information technology (health IT), she can better manage her symptoms on-the-go and enjoy a successful career and home life. Here is her story.

Diagnosed with Ulcerative Colitis

Hospitals and doctors’ offices almost feel like home by now. Barely into my teen years, I was diagnosed with ulcerative colitis, a painful and often embarrassing disease. During a time when my biggest worry should have been finding a prom date and succeeding in college, I endured four surgeries, including a colectomy.

My life’s direction and perspective were truly transformed when I underwent a liver transplant in my mid 20s. For many people, I can imagine this could be viewed as a negative experience, but I acknowledged it as a blessing and embraced it with a positive attitude.

I spent months in the hospital pre-transplant and had a frontline view of the health care system – from inadequacy of patient materials and both the good and bad of doctor and patient dynamics. I benefitted from cutting-edge innovation in medication and surgical techniques, but saw the challenges to the health care team from the volumes of data generated by the complexities of my care. I also came to realize the importance of my role as part of the health care team – asking questions, communicating information between specialists, and taking responsibility for following the treatment plan.

I knew this experience had put me in a unique position to ensure that other patients had an opportunity to avoid the frustrating parts of the medical system, while benefitting from the great parts, one of those being health information technology.

Health IT in My Life

For me, electronic health records (EHRs) are a core element of health IT and have great potential to improve patient care. I eagerly await the full integration of electronic health records across all of my providers to accelerate their exchange of information and improve the coordination of my care.

Managing Symptoms with Mobile Apps

My first exposure to health IT was an old-fashioned electronic bulletin board for patients to share information about their transplant experiences. It seems light years from the online patient forums that I participate in today. For me, one of the most directly impactful health IT examples  is a  mobile phone app I use to track my  persistent GI symptoms. This enables me to better organize what I call, “patient generated data.” Since so much of what is relevant in my condition happens outside of the doctor’s office, electronically recording my symptoms in real time has empowered me to be a better patient and reporter of my symptoms. This information – from symptoms to frequency of flare ups – ultimately allows my physician to make better decisions regarding my health.

Using Health IT in Style

Personalizing my use of health IT is part of being an empowered patient, of defining what this patient experience means to me. One thing that being a patient does not mean is being any less fashion-conscience inside the hospital than I am outside, whether that means trading in hospital gowns for silk pajamas or the no-skid slipper sock for high heels when I can get away with it. Retaining a sense of myself even when ill reminds me (and my health care team) of the person I am, not just the patient.

It’s my personal hope and professional commitment that  health IT will provide tools for patients to access, exchange, and ensure the accuracy of their personal health information, to become better advocates for their own health care, and ultimately, accelerate treatments and improve outcomes once health IT is more widely adopted.

My liver transplant changed the direction of my personal and professional life, and now, health IT is transforming the journey.