The Story of My Leukemia
Dear Friends and Readers,
I can’t begin to tell you how happy I am to resume writing about EHR user interface design and to share my ideas with the HIStalk community. I am grateful for this opportunity. By all odds, in the long view of human history, I should not be alive.
In the fall of 2013, while jogging I noticed that my exercise tolerance had decreased – I couldn’t run up a hill which a few months earlier had presented only a slight challenge. At the time, I attributed the change to just getting older. A little later, however, after climbing a single flight of stairs at work, I found that couldn’t utter a sentence without first stopping to catch my breath. Although I was still in denial, I reluctantly took time off from work to see a colleague of my PCP who was available that afternoon.
Although I had minimal findings on physical exam and my ECG was negative, by this time it was clear even to me that something was wrong. My labs were drawn and sent off. A little later that evening I got a call from my primary care doctor and friend. She advised me to go to the hospital to be admitted via the emergency department, as my hematocrit was 18 and I had other hematologic abnormalities as well.
When I asked if I could delay admission until the next morning, the answer was a tactful but emphatic ‘no.’ So with my wife Karen’s help, I packed a toothbrush and a few other things, drove to Mount Auburn Hospital (where I had done my internship 30 years before), and was admitted.
A bone marrow biopsy performed the next day revealed acute myelogenous leukemia (AML). That evening I was transferred by ambulance (although I insisted on walking and carrying my own bag) to Feldberg 7, the inpatient Bone Marrow Transplant (BMT) Unit of Beth Israel Deaconess Medical Center (BIDMC), where I received extraordinary, life-saving care over the next three months.
Quite frankly, when I was told I had AML, I thought it was more or less a death sentence. My last training in AML had been more than 30 years ago when I was a medical student. At that time, the likelihood of successful treatment was very low. My mind went to practical issues such as whether I would have enough time to organize important family documents. It was easier to focus on these kinds of things than wonder how I would say goodbye to my family and friends.
The attending physician on call that week for Feldberg 7, who has since become my trusted primary oncologist, came in from home to see me. By then it was nearly midnight. We had a long talk. Although she did not minimize any of the very real risks of the disease, the induction chemotherapy, or the eventual stem cell transplant if I should get to that point, I regained hope. I learned that my chances not just for life-prolonging treatment but for a cure were approximately 50 percent.
After two courses of induction chemotherapy complicated by several medical issues, I received a stem cell transplant on December 9, 2013. I am now a year and a half out from my transplant. Although my recovery has been complicated by mild chronic Graft versus Host Disease, I am doing very well. My most recent bone marrow biopsy showed no evidence of relapse, and at this point, there is a good chance that I am cured.
I have been transformed by my journey through illness and back to health. I am grateful beyond words to my doctors, including the fellows and house officers who took care of me; to my nurses, who in addition to providing extraordinary care, were also the main emotional support for me and my family; and to all the other members of my BIDMC health care team whose contributions often go unacknowledged.
My experience has also made me keenly aware that, day after day, at hospitals and clinics across the country (and the world), healthcare teams like mine put in the same kind of long, hard hours and devote the same kind of demanding cognitive effort in order to take care of their patients.
Even before my illness I had a strong interest in applying what we know about human perception and cognition in order to create simple, powerful, elegant EHR user interface designs – designs that make it easier for doctors and nurses to care for their patients. Now that I have experienced a life-threatening illness first hand, this interest has taken on an added personal dimension.
As a patient, I could not of course (and was far too sick to) sit next to my doctors and nurses and observe them as they entered, reviewed, and interpreted my data in BIDMC’s EHR (WebOMR), but I was certainly aware of the long hours they put in at the computer. From what I have subsequently seen of WebOMR, despite being homegrown, it is an excellent system that rivals those of the major EHR vendors.
By the same token, it shares many of the same EHR usability issues that are becoming increasingly recognized as a major barrier to achieving the Triple Aim of enhancing patient experience, improving population health, and reducing costs. I believe that John Halamka, BIDMC’s CIO, would agree – in a recent interview, he described today’s EHRs as “a horribly flawed construct.”
One ‘benefit’ of my long illness is that I have accumulated my own rather extensive electronic medical record data set (although I wouldn’t recommend obtaining one in this way). In the posts that follow, I look forward to using my data set as the basis for sharing ideas about how to display EHR information so that we can perceive it using our lightning-fast, high-bandwidth visual processing system, sparing our more limited cognitive resources for patient care issues.
Specifically, I look forward to presenting a design where we can use our visual system to grasp both the subject matter and the temporal sequence of EHR documents. The design is not intended to be a finished product, but rather a starting point, a springboard for discussion and deliberation. I welcome input from healthcare IT professionals, interaction designers, vendors, and clinicians. I would love nothing more than to see some of the design concepts incorporated into innovative open source applications that could serve as new front ends for existing EHR systems, and eventually, for personal health records as well.
Next Post: My Data Set
Rick Weinhaus, MD practices clinical ophthalmology in the Boston area. He trained at Harvard Medical School, The Massachusetts Eye and Ear Infirmary, and the Neuroscience Unit of the Schepens Eye Research Institute. He writes on how to design simple, powerful, elegant user interfaces for electronic health records (EHRs) by applying our understanding of human perception and cognition. He welcomes your comments and thoughts on this post and on EHR usability issues. E-mail Dr. Rick.