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Fighting a rare and life-threatening cancer, seven-year old Timmy Mason faces a situation where in the words of his father, “Lost days can mean a lost life.”
But thanks to eMix, the Masons now have a valuable tool to help them beat the clock of Timmy's fast-growing tumor.
Timmy, who lives with his family in the Cotswolds hills of west-central England, has a rare form of cancer called Nasopharyngeal Rhabdomyosarcoma (RMS).
After the disease was diagnosed in 2008, Timmy was treated with chemotherapy and radiation and went into remission. But he has relapsed twice since then, most recently in May. Some of his situation is chronicled on the family’s blog here and on Twitter here.
The urgency to find a cure grew in early August when the family learned the cancer had spread to Timmy's brain stem.
Through online research, Timmy's parents identified a treatment team in Minnesota whose published paper suggested their endoscopic surgical procedure might be able to help Timmy. The Masons contacted team member James Sidman, M.D., who requested Timmy's latest MRI so he could assess the case.
But given the tumor's rapidly advancing state, how could they get the MRI to him in time?
A recent edition of HIStalk, an online blog about healthcare IT, tells an inspiring story about the ability of IT to prevent catastrophic health outcomes. But it is also a cautionary tale about the primitive state of clinical data sharing today – except where cloud-based sharing is used.
The story, which took place in 1993, concerns the daughter of Ed and Julie Marx. Ed is currently CIO at Texas Health Resources in Dallas/Ft. Worth, but at the time, he was working as the physical relations coordinator at a hospital where Julie had just given birth. The newborn, Talitha, suffered from pneumonia and a hole in her stomach from a Strep B infection. The attending physicians predicted, to the Marxes' dismay, that the problems would leave their daughter physically and mentally impaired.
Talitha's best chance, the Marxes were told, was to be seen by specialists at the region's Level 1 NICU. The hospital was 90 minutes away, however, and the trip was risky for Talitha in her condition. Alternatively, the specialists were willing to consult at a distance, but only if they could access her records remotely.
Fortunately, during the previous year, the IT department had implemented technology that allowed doctors to dial in on a modem and get real- time access to clinical data. Ed worked on the project, too. Now, with his daughter's health on the line, he suddenly saw a new use for the system: Giving the specialists from the Level 1 hospital access to Talitha's records.
With Ed's urging, the proper wheels were set in motion. Access was accomplished in about two hours, beginning the clinical collaboration between the Level 1 specialists and Talitha's doctors. Treatment was so successful that the predicted impairment was averted. Today Talitha is a healthy, bright child unmarked by the near-tragedy of her first days.
That's the good news. Here's the cautionary note: Even though this drama took place nearly 20 years ago when IT was less advanced, most hospitals still have no efficient way to share clinical data if their IT systems don't talk to each other. In fact, at many hospitals, the options are far worse than what the Marxes faced. The files would have to be burned to CD and sent with the patient, which means the patient would have to take that risky trip to the Level 1 center instead of physicians collaborating remotely.
The primary exceptions are hospitals that have implemented cloud-based systems such as eMix. Today, Talitha's records could be accessed in a few minutes, not hours, via the cloud. Now that cloud-based data-sharing has arrived, hospitals everywhere have the ability to immediately share patient data in emergency situations. There is no longer an excuse for doing otherwise.
Copyright© 2009-2013 DR Systems, Inc. All rights reserved. eMix is a trademark of DR Systems, Inc. with various product modules protected by one or more of U.S. Patent # 7,660,488; 7,787,672; 7,885,440; 7,953,614; 7,970,625; 8,019,138; 8,094,901, and other patents pending. Specifications are subject to change without notice.