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Knowledge Held Hostage

Locked-up information kills patients

The New Physician March 2007
When I first see Betty Kearns, I don’t think she will survive until morning. It is 20 minutes to midnight and I am hungry, sweaty and craving sleep. As senior resident in the ICU, I have spent the last four hours placing central lines, resuscitating arrest victims and meeting with a family about their dying father. I am in no mood for more. But one look at Betty and I have to accept that relief isn’t coming anytime soon.


She looks like a corpse when the paramedics wheel her gurney into the ICU. She has long, gray hair matted against her pillow. She is unconscious; her mouth hangs open with a breathing tube jutting out and trickles drool onto her bile-green gown. One of the EMTs squeezes an ambu bag, making her chest rise and fall. She is little more than a skeleton, her wrinkled skin hanging helplessly over bones.


“Paperwork for you, doc,” one of the EMTs says, handing me a manila envelope. I sit down in a high swivel chair while the nurses settle Betty into her bed.

Four hours ago, another hospital called my attending, requesting to transfer Betty. They said she was in her late 80s with a complicated medical history. Admitted there two days ago with respiratory failure, she had steadily deteriorated in the ICU. Now opening the envelope, I hope to learn more.


But I do not learn more. As is so often the case with patient transfers, the other institution sent little information. There is an ER nurse’s note, two days old, documenting her initial complaint (“shortness of breath”). There is a scribbled list of medications she is on. Other than that, and a few sheets of demographic information, there is nothing.


Sighing, I pick up the phone to call the other hospital. As I dial, I know what’s coming next. The transferring doctor will not be there, and the staff who knew Betty will have left for the day. At best I’ll find a helpful nurse manager who will try to dig up some records. At worst I’ll get nothing and have to completely start over.


It is then that I think to myself, medical information could save Betty’s life.


Betty is not new to the medical system. Over the years she has seen scores of doctors, pharmacists, hospitals and clinics. She has been examined hundreds of times and given her medical history many more. Enough blood has been drawn from her veins to fill gallon jugs. Her body has been scanned by ultrasound beams and X-rays, the images reconstructed by the most modern computers.


Yet none of this information is available to me now. A computer sits at the nurses’ station next to me—a computer with an Internet connection able to communicate with Web sites around the globe. Although I can instantly learn the weather across the country, I cannot access Betty’s allergy list from her pharmacy 50 miles away. Although I can read newspaper articles from the past 10 years, I cannot learn the results of Betty’s blood work from this morning.


Patient medical information is a resource shackled to a former age, mired in the pen-and-paper era. While industries around the globe have leapt forward technologically, medicine has merely inched ahead. Its move to computers has been sluggish and chaotic. Much information is still imprisoned on paper, and the few computer systems that exist cannot communicate with each other.


As the phone rings at the other hospital, I think of all the ways medical information could benefit Betty. The first and most obvious way is to tell me her medical history—something she is unable to do in her present state. In addition to revealing the last two days of her care, it could tell me about allergies, past medical problems and risk factors for myriad diseases. I could make informed decisions about her care and avert the pitfalls of her previous doctors. I could avoid repeating tests—something that may put Betty at unnecessary risk and cost the health-care system dearly. In essence, I could be more informed as I try to save her life.


But that is only the beginning. Personal medical information, like Betty’s medical records, and scientific medical information, like the thousands of clinical trials published annually, exist in isolation from one another. A doctor’s primary focus throughout the day must be the patient. As my call night in the ICU illustrates, keeping up with the medical literature is often brushed aside in favor of patient-related chores like placing orders, performing procedures and documenting in charts. But why must these things be separate?


If medicine was truly an integrated information industry, Betty’s personal medical record could be woven into the fabric of medical science. I could order tests and treatments for her that would be instantly checked against current national guidelines. I could be alerted to new scientific publications pertaining to her medical problems. My treatment of her sepsis, respiratory failure or stroke would not be limited to my own recollections, but instead integrated with the latest clinical trials. I could be warned of emerging antibiotic resistance in the community. I could be prompted to recommend proven preventive measures like vaccinations, aspirin and healthy diet.


Then my performance in all these areas could be catalogued, telling me how I compare with my peers across the country. I could treat Betty not as a solo practitioner, but as a member of a global health-care team, bringing the brunt of cutting-edge medical knowledge to bear against the diseases that threaten her life.


After several rings, a pleasant, polite nurse answers the phone. She apologizes profusely for the lack of records. She offers to find Betty’s chart and fax it to me. After thanking her, I hang up the phone and walk into Betty’s room.


Standing at her bedside, still tired and hungry, I do the best I can with the information I have.
Jason Ryan is a clinical fellow in the Division of Cardiology at Beth Israel Deaconess Medical Center in Boston. His essay received first place in a recent writing competition sponsored by Elsevier.