Excerpt from Casino Healthcare by Dan Munro.
Part 2 of 3.
In Part 1 of this three-part series we saw how the world of packet-switching technology truncated the word “interoperability” to just “interop” and how that world successfully navigated many of the early technical challenges inherent in building an infrastructure for the benefit of an entire vendor community and global industry.
The parallels are similar to healthcare except for a few key variables ‒ and one in particular. A lack of urgency by many in the healthcare IT community to act cooperatively for the benefit of both consumers and an entire industry. Given the life-and-death consequence associated with health data interop some consider this to be outright criminal negligence ‒ even if there’s no legal basis for prosecution. Those are serious ‒ some might say exaggerated ‒ charges. Legal matters are for the courts to decide, of course, but here are some useful definitions:
Negligence: Failure to act with the prudence that a reasonable person would exercise under the same circumstances.
Criminal negligence: Recklessly acting without reasonable caution and putting another person at risk of injury or death (or failing to do something with the same consequences).
In fairness, it’s not entirely the fault of vendors who design and sell software. As a software engineer myself, I know that all too often it’s the buyers who pay for design specs that protect their commercial interests as well ‒ so it’s really a shared culpability.
Today, most of the focus for healthcare interop revolves around the lack of Electronic Health Records (EHR) to easily share patient data, but that’s only part of the whole story. There’s also an urgent need for broader healthcare interop that includes medical devices, wearables and other sensors that are destined for our health future. Many of these devices are also hampered by lack of data interop ‒ and in some cases ‒ even direct patient access. In these battles, patients are caught squarely in the middle of competing commercial interests around systems that have been optimized for revenue and profits ‒ not safety and quality. Two patient cases highlight the challenge beyond just the EHR.
In November 2011, Hugo Campos took to the TEDx stage in Cambridge to share the story of his implantable cardiac defibrillator (ICD). While the device literally collects every beat of his heart, the manufacturer (Medtronic) considers the digital data “stream” to be their rightful and legal property. An entirely separate device (used to capture the data for clinical interpretation) is also proprietary to Medtronic as a part of the closed-loop ICD “system.” Hugo is the host for their device ‒ but not considered an active participant.
In the world of medical devices, the truly antiquated thinking has often been that patient access to this type of clinical data is simply inappropriate and should only be collected and interpreted by clinicians. Using this antiquated logic, why should the format be anything BUT proprietary?
As a Type-1 Diabetic, Anna McCollister‒Slipp described her frustration in trying to manage data from four different electronic devices (clinically prescribed) because each of the devices has its own proprietary data formats.
These are amazing machines – it’s incredible technology – and the care of diabetes has improved dramatically because of them and because of some of the newer insulins that we have on the market. However, one of the most important things for me and for others like me with Type 1 in terms of managing our disease is understanding [the] patterns and right now all of my medical devices use different data formats, different data standards [and] they don’t communicate. The View of Digital Health From an ‘Engaged Patient’ – Forbes
Dr. Bob Wachter described the history behind some of the more immediate challenges with EHR software (including a 39‒fold overdose of a common antibiotic) in his recent book ‒ The Digital Doctor. The book should be required reading (almost a textbook) for everyone in healthcare IT because understanding the history of “wiring healthcare” (his phrase) is critical to understanding many of the current business tensions. Not surprisingly, he also arrived at a conclusion that many of us have been arguing for years.
“Underlying many of the discussions regarding personal health records, health exchanges, and interoperability is the need for a universal patient identifier, and ultimately a universal patient record that would be accessible anywhere to you or others who need it. Congress passed and President Clinton signed a law banning the use of federal funding to create such a number. This means that any effort to share records between hospitals, or even to access your medical history if you arrive at the ER unconscious, has to begin by solving the high-stakes Sudoku game of figuring out who the hell you are.” [bold emphasis mine ‒ page 189 of The Digital Doctor]
This particular “Sudoku game” is fraught with errors. In a 2012 Recommendation to Congress HIMSS cited this sobering statistic.
Patient-data mismatches remain a significant and growing problem. According to industry estimates, between eight and 14 percent of medical records include erroneous information tied to an incorrect patient identity. The result is increased costs estimated at hundreds of millions of dollars per year to correct information. These errors can result in serious risks to patient safety. Mismatches, which already occur at a significant rate within individual institutions and systems will significantly increase when entities communicate among each other via HIE ‒ a Meaningful Use Stage 2 requirement ‒ that may be using different systems, different matching algorithms, and different data dictionaries.
Dr. Wachter found additional support from Michael Blum (CIO of UCSF Medical Center) who called the Congressional ban on establishing a universal patient identifier “the biggest single failure in the history of health IT legislation.” [page 189 of The Digital Doctor]
The natural fear ‒ and the one that has derailed all efforts to this point ‒ remains patient privacy. That’s not an unreasonable fear because in the course of less than 12 months, the U.S. healthcare system lost almost 96 million records (about 30% of the U.S. population) to cybertheft. This happened without a national patient identifier. That’s not to say the records would have been safe by simply adding a national patient identifier, but we need more technical security ‒ including an intelligent identifier ‒ not just a name, social security number and home address.
The technical reality is that without modern data standards in healthcare, our personal health information is at greater risk as long as we rely on antiquated methods of simple numbers and text fields (that are prone to easy data entry errors ‒ and then require complex games of Sudoku to figure out who the hell we are).
Healthcare is certainly not unique as an industry that has struggled with standards. Without going into the rich and colorful history of health IT standards ‒ competing commercial interests often create an endless loop. This loop isn’t unique to healthcare, of course, but the stakes in healthcare are quite literally measured in human lives.
There is, however, another industry that does parallel healthcare in some important ways relative to data interop and the comparison might be surprising ‒ auto manufacturing.
Auto manufacturing had a interesting data interop problem from about 1954 to 1981. During those years ‒ as auto manufacturing was growing rapidly ‒ each auto manufacturer developed their own vehicle identification numbering system. Chaos ensued in that it was virtually impossible to track vehicles quickly ‒ let alone nationally. Vehicle tracking is important across at least five important vectors.
- Damage (floods, tornadoes etc…)
Like the healthcare industry, auto manufacturing also has many stakeholders with a wide range of needs to track vehicles nationally and quickly.
- Law enforcement
- Insurance companies
- Legislation around vehicle and consumer safety
Much like healthcare, transportation (including vehicle identification) is largely an issue of consumer safety.
So, in 1981, the National Highway Traffic Safety Administration (NHTSA) mandated the use of a 17 character VIN (based on International Standard Organization ‒ ISO 3779), and while it’s not perfect – it does make it much easier to track cars nationally with relative ease. It has become so successful that auto manufacturers now stamp the VIN on almost all of the major components of each new car. The success of CarFax today hinges not on being able to get the information quickly online ‒ but the underlying VIN standard for tracking cars nationally from assembly to salvage ‒ and every step in between. It’s a simple database query.
In Part 3 ‒ we’ll conclude our review of healthcare interop with an exciting new standard, the answer to the headline question and the road ahead.
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