MEG WAS ONLY 4 WHEN SHE GOT SICK. Random days of vomiting increased to longer spells, and the episodes came more frequently. After an especially bad week, I checked my daughter into the local emergency room. It turned out Meg was in acute metabolic failure.
The following morning when the physician checked on Meg, he told us, “I lost a lot of sleep over your daughter last night, and I still have no idea why she ended up so sick.” He continued, “Her blood work looks OK this morning, but if she crashes again, you need to head to a major hospital where they can get to the bottom of this.” Within 24 hours that’s where we were. This was the start of our journey through endless specialists, a dozen hospitals in four states, and a challenging medical system.
Less than two years later, Meg had endured muscle biopsy surgery, and around a dozen emergency room visits and admissions. She had worsening muscle weakness and required a wheelchair to go longer distances and an assisted ventilation machine to keep her oxygenated while she slept. At this rate of decline, she wouldn’t live very long. We were living every parent’s nightmare. And we still didn’t have a diagnosis. Compounding the problem was the lack of a reasonable mechanism for Meg’s many specialists and several hospitals to be working together, or at the very least freely sharing information.
According to a report from the Office of the National Coordinator for Health Information Technology, medical information sharing happens inconsistently, typically by phone, fax, or mail and “frequently arrives late, if at all and is not available for decision-making at the point of care.” One survey found that 73% of primary care doctors, who are responsible for taking over care for their patients upon hospital release, had not received hospital discharge summaries within two days of discharge causing delays in care and additional, unnecessary lab and imaging testing.
James C. Salwitz, a medical oncologist, laments on his blog, “We continue to tolerate a health care system where our personal information is kept locked in unconnected, non-communicating silos, so that every time we see a new practitioner we have to start again and the only thing that protects us from disaster is our own memory of our medical past.” Dr. Charles Sninsky expands on the problem of relying on families for this information calling it “a tremendous amount to ask of family members, who are at varying levels of education and dedication to ensuring the well-being of their families.”
We’ve relied on several dedicated physicians who have spent countless hours compiling and sharing Meg’s medical information with other doctors. Their work has been invaluable but their time is being wasted. These excellent, highly trained medical professionals are doing something that could be accomplished automatically, more quickly and more thoroughly by a national electronic medical records (EMR) system. Luckily, the technology is available; we just need the will to put it in play.
Dr. Salwitz points out, “I can determine the weather in Rio, sport scores of Barcelona, Parisian traffic or by GPS the location of my kids, just down the block. However, I absolutely cannot learn anything at all of the health history of the flesh and blood cancer patient sitting right in front of me.” As Dr.Salwitz points out, the technology exists to solve this problem. Specifically, electronic medical records systems are already being deployed widely, and inter-operability standards, created by the Office of the National Coordinator for Health Information Technology, exist and are incorporated into many EMR products. The features just aren’t being used.
In his article in the Gastroenterology and Hepatology Journal, Dr. Charles Sninsky agrees: “The development of a national EMR system that is accessible to patients and physicians, yet secure in protecting personal information, would represent a major advance in the ongoing process of US healthcare reform.” He points out that such a system will produce costs savings, and better patient outcomes and adds, “it can be a valuable research tool, providing steadily accumulating data on the efficacy and safety of new procedures and medications in the real-world setting.” Dr. Salwitz says universal EMR will “improve the safety, quality and efficiency of medical care and thereby save lives. As a parent I plead, “Please, give my daughter the best possible care.”
For me, the best possible care would mean that the next time my daughter needs to go to the hospital, the emergency room physician could quickly access Meg’s test results, hospitalizations, diagnoses, previous successful treatment approaches, contact information for her specialists for possible consultation, and her current medications. It would mean that Meg would receive better care faster and that she could avoid the repetition of potentially painful and costly tests. It would also allow me to focus on comforting my child instead of trying desperately to make sure that I don’t forget to report something critical. It would mean that the best doctors from across the country could easily collaborate on her care. It might even save her life, and if not hers, surely someone’s.
Charles A., S. (2008). Developing Universal Electronic Medical Records.Gastroenterology & Hepatology, 4(3), 193–195.
Claudia Williams, Farzad Mostashari, Kory Mertz, Emily Hogin and Parmeeth Atwal From The Office Of The National Coordinator: The Strategy For Advancing The Exchange of Health Information Health Affairs, 31, no.3 (2012):527-536
Salwitz, J. C. (2013, February 6). Can Facebook save us?. In Sunrise Rounds.