Blogger: Joe Bugajski
Mr. President, your historic economic stimulus package (The American Recovery and Reinvestment Act of 2009), appropriated $19 billion for health information technology ("Technology Gets a Piece of Stimulus", New York Times, January 25, 2009). This week, your Director of the Office of Management and Budget (OMB), Peter Orszag, shockingly held that half of the US operating deficit can disappear with lower healthcare costs and these will obtain through electronic healthcare records (Daily Show, 6 April 2009). Today, the Wall Street Journal wrote that you proudly proclaimed that electronic healthcare records for the members of the US military, like my youngest son, and continuing through Veterans Affairs "will provide a 'seamless system' to facilitate information sharing and cut red tape, ending the need for veterans to transfer military records to receive benefits". Whereas Star Wars and Star Gate movie fantasies provide great fun, witnessing you, a world leader, spew delusional visions of a nation-covering, interoperable, secure, private, reliable, accurate, and instantaneous electronic healthcare data network is at best terrifying and at worst pernicious.
Two months ago and for 100 hours I battled for my life with a networked, state-of-the-art, secure, electronic healthcare record system. It connected two of arguably the most advanced medical facilities in the world. One was a modern clinic built by generous benefactors from the computer industry. The other was a world renown hospital at a top ten university. Both facilities bristled with brain-power and hi-tech gadgets. All records were "computerized" - that was what was so very wrong with the care that I did not receive, albeit competent and attentive nursing staff managed my care as they shuffled me around the emergency room (ER) and intensive care unit (ICU). (For more about what went wrong and how it went wrong, read my personal blog.)
The reason things went so wrong during my clinic, then hospital, stay, and the reason, Mr. President, your grand vision of a universal IT health data network is so screwy, is that healthcare data cannot be reliably modeled. An unreliable data model for health records; like those at the two world-class, completely electronic facilities, that "cared for me"; accelerate prescription errors, prevent staff from efficiently delivering services, heighten life-threatening risks, and dramatically increase costs. Data models are the technical instructions for software to make "computerized health records" possible. Indeed, data models make all computer records possible. According to my friend, colleague, and data modeling guru, Joe Maguire, "data modeling is a family of techniques used to describe the kinds of information that are important to an enterprise". Healthcare data is clearly important but that fact alone does make for reliable data models. Good models require stable data and good data modelers. Unfortunately, healthcare data is unstable. Sadly, good data modelers are scarce.
The first problem with modeling healthcare data is that models must represent certain concepts (and not others) that will remain stable and true long enough to be built into computer software then used by healthcare providers and patients. Mr. Obama, have you noticed just how much knowledge has, is, and will be accumulating in the medical sciences? Knowledge is codified using words - medical knowledge uses copious quantities of difficult words taken from several languages. Words that recur frequently in a particular context become imbued with a meaning that includes the context (e.g., the White House). Such words then come to symbolize a bigger idea than originally intended (i.e., a "house" that happens to be "white", versus your administration and not the house). In medicine, how many stable words exist? These words - nay, well-formed concepts, repeatable, agreed by the medical community - can be modeled and added to computers to store records. Go one step further. Specialization in ER, ICU, cardiac care, pulmonology, oncology, radiology, and other medical subjects exists because the cumulative knowledge defines a large ontology. The ontology, taxonomy, skills, and knowledge of an medical subject area then can be referenced with one word - the name of the specialty. Unfortunately, words that refer to a concept in one specialty often mean something different in another specialty.
The second problem is the lack of good modelers. These people, specialists in data engineering, a subfield of software engineering, transform concepts into graphical and lexical patterns that are used to create computer records. The concepts they model are words (nouns and verbs) plus concepts used by practitioners to describe a patient's medical condition, or a critical care pathway, medications, instructions to patients and nursing staff, tests, and diagnoses. Who among us has the modeling skills to encode this data? As information varies across specialties, how should it be encoded? Empirical evidence suggests that engineers who built the electronic health records network at the two facilities that "cared for me" tried to do this, but they failed. Their data model had irreconcilable silos of information spread across specialties and expressed as incomplete taxonomies (entities), inadequate ontologies (attributes), and poor associativity (relationships). Hence, when programmers added those bad data models to the health information systems, those systems later lost critical information about patients' condition, listed wrong medications,isolated prior diagnoses from current observations, in short, made very bad medicine.
Please do not misunderstand, Mr. President, the medical personnel at the clinic and the hospital were professional, competent, and knowledgeable. It is just that when they interacted with me and other patients, then translated that interaction into electronic health information systems, there was always a fight. Indeed, healthcare professionals wasted between 40% and 60% of the time they had allotted to patient care with making electronic health records work very poorly.
Since the time of my illness, I met and spoke with a dozen medical professionals and healthcare IT experts. They unanimously confirmed my sickbed analysis of the faults with electronic health records. Most longed for handwritten charts hanging at the foot of every patient's bed (see, Professor Dr. Armstrong-Coben’s New York Times Op-Ed ) - now, so do I.
Mr. President, before your administration pours billions of our grandchildren's yet to be hard earned dollars into the biggest, scariest, and most wasteful boondoggle of an IT project the world has ever seen, please instruct your health IT experts to carefully analyze the strengths, weaknesses, opportunities, and threats (SWOT) associated with building a national heath information network using today's technology. Tell them to take the simplest steps first. Make them prove results in small projects. Insist that your experts read my paper, "Data Integration: Fantasies and Facts". It explains how to start and manage a large scale data integration project.
If our nation simply accepts your vision while healthcare IT vendors collect a lion's share of the $20 billion stimulus bounty, individuals and businesses will pay higher medical costs, patients will receive inferior care, medical professionals will loose more of their precious time fighting IT systems instead of delivering better care, and you will be a one term president.
With profound admiration and respect,