EHR-stored Health Data: Access Issues Confront Cloud Innovation

We obviously have yet to decipher what intellectual property is in this digital age. Regardless of what the purveyors of digital content do, the outcome will depend on what consumers are willing to put up with.

I read a lot. I've discovered over the past year or so that I enjoy reading on a device like the iPad or the Nook much more than I enjoy reading printed books. It's partially that I can adjust the size of the fonts and partially because books are awkward to hold, especially while you are pedaling an exercise bike. On the other hand, I get enjoyment from owning printed books. There they are on the shelf. I can read one whenever I want. Batteries don't have to be charged. It doesn't have to be re-downloaded. It's mine, and barring a catastrophe, it will continue to be mine for years to come.

As much as I prefer e-books, I don't like paying for them. It's not because I'm cheap, it's because I'm not sure that I'm getting anything permanent. If I buy Kindle books and then decide that I like the Nook better, the Kindle books are history. Of course, until Amazon goes out of business or changes their policies (which on-line services do frequently) I can always download my "purchases" again. But these purchases are more like purchasing a theater ticket than like purchasing a print book. You don't actually get anything except the permissions to browse through a collection of electrons that someone agrees to provide.

I feel differently about paying for an e-book when it is not encumbered with "Digital Rights Management" (DRM) which is, in my opinion, another name for a dormant Denial of Service attack, waiting to prevent you from making legitimate use of something when you most need it because of a technical gotcha.

Even DRM-free material is still not the same as a printed book. It is stored on media (magnetic or other) and that media has to be physically manipulated and read by a computer or other device and this is not a sure thing. Hard disks crash. Tapes become unreadable for mysterious reasons. Formats become obsolete and cease to be supported by new hardware and software. Unless you keep the old computers around, and running, the old media are just about useless.

I know. I've got tapes in the closet with backups of the EHR that my wife used in her practice back in 1984. I've got them - but they are useless. The tape drives have failed and cannot be replaced. The operating system won't run on anything newer than a 486 chip. We own the charts (books, if you will) but so what? We can't read them. They are useless.

This makes me wonder about the merit of spending my time (or your time) using any of today's EHRs, especially the new "cloud-based" ones. After all, time is money. Even if the EHR is "free," its total cost is still quite high if you put any value at all on your time.

And the final question: How many years will elapse before all of that work of yours effectively goes up in smoke because the vendor goes out of business, releases a major new version that is not backwardly compatible, or your backups become unreadable for some reason?

If you think it can't happen to you, here are three examples. An interesting EHR called MasterChart came on the market years ago and folded within a year, stranding a bunch of practices. At the hospital where I work, the vendor is pulling the plug on their system after 20 years. There is no obvious migration strategy. Much of the information in the system will be lost and we will have only paper "shadow charts" and the document imaging system to fall back on for old medical records. Finally, Pixar's Oren Jacob and Galyn Susman recount how the files for "Toy Story 2" were almost lost in this short video.

Right now, stone tablets, acid-free paper, and pages microscopically etched on solid nickel disks are starting to look pretty good.

It's worth thinking about.

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