When you’re seeing a patient, it’s very often useful to do a search for diagnostic and therapeutic guidelines, medical articles, regional or institutional recommendations and so on. These searches need to be restricted to appropriate sources, not just the wild internet. Once you’ve done a search and found some useful information, you’d probably want to save a reference to it and be able to locate it again the next time you see this patient, or another patient with a similar problem.
As I see the structure of medical knowledge and its application to patients, there are three levels:
- Biological science, pathology, EBM, epidemiology, etc. In other words, everything we know about human biology and pathology in the large, not at the individual level.
- Applications and methods that apply biological science to the individual patient, and methods using the history of the patient to search for applicable science.
- Knowledge about a particular patient, signs, symptoms, treatments and diagnostics that have already been performed. In short, the individual patient history.
Each of these three levels correspond to particular processes and methods, and computer applications also fit one or more of these levels. For instance, IBM Watson sits squarely in level 1, while current Electronic Healthcare Record (EHR) systems are fully in level 31.
I think the major problem is that buyers specify domain functionality, but not the huge list of “non-functional requirements”. So anyone fulfilling the functional requirements can sell their piece of crap as lowest bidder.
Looking at a modern application, non-functional requirements are stuff like resilience, redundancy, load management, the whole security thing, but also cut-and-paste in a myriad of formats, a number of import and export data formats, ability to quick switch between users, ability to save state and transfer user state from machine to machine, undo/redo, accessibility, error logging and fault management, adaptive user interface layouts, and on and on.
I’d estimate that all these non-functional requirements can easily be the largest part of the design and development of a modern application, but since medical apps are, apparantly, never specified with any of that, they’re artificially cheap, and, not to mince words, a huge pile of stinking crap.
It’s really easy to write an app that does one thing, but it’s much harder and more expensive to write an app that actually works in real environments and in conjunction with other applications. So, this is on the purchasers’ heads. Mainly.
This article is an excellent description of some of the serious problems related to IT security in healthcare.
Even though medical staff actively circumvent “security” in a myriad inventive ways, it’s pretty clear that 99% of the blame lies with IT staff and vendors being completely out of touch with the actual institutional mission. To be able to create working and useable systems, you *must* understand and be part of the medical work. So far, I’ve met very few technologists even remotely interested in learning more about the profession they’re ostensibly meant to be serving. It boggles the mind, but not in a good way.
“Unfortunately, all too often, with these tools, clinicians cannot do their job—and the medical mission trumps the security mission.”
“During a 14-hour day, the clinician estimated he spent almost 1.5 hours merely logging in.”
“…where clinicians view cyber security as an annoyance rather than as an essential part of patient safety and organizational mission.”
“A nurse reports that one hospital’s EMR prevented users from logging in if they were already logged in somewhere else, although it would not meaningfully identify where the offending session was.”
This one, I’ve personally experienced when visiting another clinic. Time and time again. You then have to call back to the office and ask someone to reboot or even unplug the office computer, since it’s locked to my account and noone at the office is trusted with an admin password… Yes, I could have logged out before leaving, assuming I even knew I was going to be called elsewhere then. Yes, I could log out every time I left the office, but logging in took 5-10 minutes. So screen lock was the only viable solution.
“Many workarounds occur because the health IT itself can undermine the central mission of the clinician: serving patients.”
“As in other domains, clinicians would also create shadow systems operating in parallel to the health IT.”
Over here, patients are given full access to medical records over the ‘net, which leads physicians to write down less in the records. Think this through to its logical conclusion…
Caspar Bowden spoke at the 31c3 conference. Snippets:
I told my technology officers at MicroSoft that if you sell cloud computing services to your own governments, this means that the NSA can do unlimited surveillance on that data. […] two months later they did fire me.
“Technology officers” represent MicroSoft in their respective countries.
On the “FISA Amendment Act of 2008 (Sec 702)”:
This means if you are not American, you cannot trust U.S. software services!!
The US congress was laughing, laughing at the idea that you have privacy rights. That is the climate of the US privacy debate.
“You”, in that sentence, refers to non-US persons outside the US.
FISAAA offers zero protection to foreigner’s data in US clouds.
US is “exceptionally exceptional”: The number of references in surveillance law that discriminate by citizenship/nationality (NOT geography of communication path), per country:
US: 40, UK: zero, Germany: 1, Canada: 2, New Zeeland: 2, Australia: 2. No others.
We need to give them watertight asylum, and probably some incentives, some rewards. I actually proposed to the parliament [EU parliament] that the whistleblower should get 25% of any fines subsequently exacted.
Big applause from the audience…
How do people know politicians and officials aren’t influenced by fear of NSA spying in their own private life? […] this is highly corrosive to democracy!
The thoughts that Edward Snowden has put in the minds of people cannot now be unthought.
What this all means, in practice, relating back to medical applications, is that we (Europeans) can’t use US software or services, which includes medical records such as EPIC, data analysis services such as IMS Health, data storage such as Amazon, Azure, iCloud, backup solutions (unless encrypted client side), or even US operating systems such as Android, iOS, OSX, Windows, a series of embedded OS, etc. At least not if we care about our patient’s right to privacy.
My TEDx talk is now public. It’s all about how bad current EHR systems are at helping us do our jobs as doctors. The title is “Rethinking clinical thinking: your doctor’s tools are blunt”. Enjoy it at:
Check out this article on “Improbable Research”. In short, it’s an application that can take raw data and write an article around it. Personally, I think it’s a good thing if the result is more objective and complete than most journalistic writing we see today. Can’t be less researched, at least.
But it also goes to show the opposite, which has a bearing on medical publications. In medicine, we have a huge problem with the sheer amount of articles published. If you want to find out the state of art in some particular disease or treatment, you have to collect a number of articles, skim through them, try to get at the original data that was used (very hard) and make up your mind. There’s not much guarantee of objectivity in selection or interpretation of the articles, and very little objective data on how reliable the articles are. If you can find a (reliable) meta study, it’s easier.
If a machine can produce medical articles based on study data, and those articles look like the real thing, this proves that the prose in the article is not a real value add. In other words, nothing in the text adds information beyond what the raw data already contains. And if it does, it’s probably misleading and wrong, anyway.
In conclusion, this only goes to show that what we need is more studies and less articles. What we need is immediate access to the raw data of all relevant studies and a desktop application that lets us view and manipulate the total of that data according to our needs, without going through the complications of reading articles and reverse-engineer the texts down to the objective facts hiding behind them.
Maybe this heralds the death of medical publishing as it looks today, and if so, good riddance.
I was invited to give a lecture to the International Masters Programme in Health Informatics at Karolinska Institute, and we recorded a video of the entire lecture, in total around 3.5 hours. The last part is about iotaMed, our open source project for a “new and improved” electronic health care record, which is knowledge support, medical record, and national registries all rolled into one.
The rest of the lecture is about a lot of different things I have opinions about, and as there is no lack of things I feel strongly about, it went almost an hour longer than it should have.
The full lecture consists of 12 chapters (“parts”), each 1-4 video segments (YouTube limits videos to max 15 minutes, and that makes for a lot of dividing of videos). You can find the lecture notes here. Oh, by the way, the site for the iotaMed project is here. The playlist with all 20 videos is on YouTube here.
I’m just copying a post here I just did to a closed forum for CISSPs.
A couple of days ago, I had to create a death certificate in Cosmic, the EHR system produced by Cambio Healthcare Systems and used in many provinces of Sweden and increasingly abroad.
So, I opened up the records for the patient, created a new death certificate form and filled it in. Printed it out, since it needs to go the paper route to the IRS (in Sweden, they handle the population registry). Then, just to make sure my data matched the EHR entry I made a few days before, I opened up the form again and discovered four different entry fields had changed after I saved. Two adress fields were blanked, my “place of employment” was changed to “Summer house” (part of another field I had filled in) and finally, my telephone number I had added was blanked out. I corrected the fields and resaved, same thing happened again. Did it three times, same thing. I never signed the document, of course, instead having a secretary scan in my paper form, which was correct, and have that put in the EHR. The erroneous form remains there, but unsigned.
I pointed out this severe bug to the IT department, and the reply I just got went into some depth explaining to me what the different fields were supposed to contain, but they didn’t touch at all on the hairraising fact of changing the documents behind my back. That’s apparantly entirely ok for them.
In this scenario, I never signed, but if I had done that, nothing would have played out differently. The scary thing is that the normal workflow is to fill in a form, any form, print it out (optionally), then sign it, which flags it as signed and saves it in one operation. You never see what actually gets saved with your “signature” on it. We’ve had a number of bugs before, where dates were changed in sick leave forms, a number of crucial fields erased and so on, so this is just the last in a long series of such bugs.
This system, the largest on the Scandinavian market, uses Acrobat Reader (yes, you read that right, *Reader*) to fill in forms. So they prepare the form data in the background, launch the Reader, lock it down modally since they can’t handle the interactions right, then let you edit and save. The “save” and “signature”, even “delete” buttons are implemented *inside* the document form since they run modally. Just to give you an idea of the “leading edge technology” we’re talking about here.
The forms as such are designed by the end-user organisation, so the problem is in two parts: Cambio enables a sloppy workflow and does not respect the immutability of signed data in their application. The end-user organisation does not test new forms for problems.
So, my issues with all this are:
1. This product has passed CE approval. So where is the systems test? These problems are trivial to find before rollout. Not to mention that I, and others, have pointed these form problems out in public since at least two years. What’s the point of the CE, anyway?
2. If Cosmic is able to change the content of forms behind my back, why isn’t this recorded in a log? There is no way I can show after the fact that the form contains stuff I never wrote, even if I would be able to remember what I wrote and this has caused much consternation before with the sick leave forms. Why isn’t audit trailing of this a requirement from the user organisation or from the CE protocol?
3. Why does the system not warn me or show me the changed information during or after signature? It bloody well warns me for everything else I don’t need warnings for. A typical Windows app, if you get my drift.
4. Why doesn’t the “signature” mean anything? It’s simply a flag set in the system with no functional binding to the information. They’re in the process of rolling out smart cards now; I have one. You stick them into a slot on the keyboard to sign in, at least that’s the idea (doesn’t work, they don’t have the trusted root installed…). But that’s for Windows login. The “signature” in the EHR remains a dumb flag AFAIK.
Meanwhile, the law and regulations governing medical practice make a huge deal out of these signatures. We *have* to sign stuff in a timely fashion and can be sanctioned if we don’t. And if we do sign, we’re held to what we sign, legally, morally, ethically. Our careers can be held hostage by a stupid flag in a stupid database record, designed by an irresponsible designer, and implemented by an agile and equally uninformed coder.
My question is this: is this shitty state of affairs, this total ignorance of what the law and regulations say, this total lack of interest in quality and consistency in application design and implementation, something common to EHR systems everywhere? Is this laissez-faire attitude something you actively try to combat as security professionals if you work in the medical field, and if not, why not?
Or, provocatively, I’ve repeatedly heard on this list (it’s a while since last time) that doctors don’t respect security in EHR systems, but now my question is this: does anyone else? It seems not.
And finally, WTF is the point of the CE approval…? I’ve seen all the cynical answers, now I want a real answer somehow.
My previous post got a few reactions from the IT people, all of them sounding as virgins having their panties pulled down. To say they didn’t like it is the understatement of the day. Which leads me to conclude I wasn’t clear enough. It also points to something being seriously wrong with their idea of their role, so let’s clarify that, too. I understand what brought us to this, namely “democracy in the workplace”, but if this is the price we have to pay for it, it’s too expensive by far. Nothing is worth this degree of dereliction of duty.
Healthcare in Sweden, as everywhere else, has one well-defined and unassailable goal and that is to make and keep the population as healty as possible, or some other variation of the Hippocratic oath. That’s what it’s for, nothing more, nothing less. The providers of this service are doctors, nurses, and other paramedicals. To support them in their work, we have IT staff, administrative staff, housekeeping, etc. There is no ambiguity in the roles or lines of authority here. Doctors at the top, nursing and paramedicals under them, except in certain areas of care where nursing and paramedicals work independently under their own authority. Nowhere is IT to be seen in this diagram, since IT staff have no authority of any kind in healthcare. They should have absolutely no say in how healthcare is provided or even with what means it is provided. Theirs is to do what we tell them to do as well as they can. But it seems they’ve lost track of this along the way.
In Sweden, the IT staff in many places has taken it upon themselves to decide what equipment and software doctors and nurses should use. It’s no wonder it has turned into a total disaster. These people have no idea what this stuff is supposed to be used for, they don’t have the training for it, and naturally, I pointed this out with my usual tact and finesse, resulting in the virginal yelps of affront. Amidst the whining, the best offer I got was that they’re willing to sit down on neutral territory for open discussions about what can be done. You must be kidding me!
Now get this, IT support people: you are support people. That means, you’re not to question how healthcare is to be done. You are not to question what we need in the form of IT to do our job. You have one task, and one task only, and that is to provide the medical staff with the best IT support you possibly can. If you’re not willing or able to do that, you shouldn’t be in this business.
Now get this, medical managers: you should never have let IT people misunderstand their role this badly. It’s up to you to clearly state the goals of the organizations and see to it that everyone in the organization understands and supports that goal and keep their noses pointed in the right direction. You’ve failed in that and now you have to fix it!
As things are now, the healthcare IT people behave as if they’re Santa Claus in disguise. If you get a working machine from them, they expect a big smile and a big thanks. And if you’re naughty, you’ll have to wait another year for your gift.
We doctors are also to blame. In our efforts to be nice to people, we have let them believe it’s ok to have to beg them for machines, and by implication, that they can reward us if we’re nice to them. These machines aren’t toys, they are the means we must have to perform our primary task, and that is, as you conveniently seem to have forgotten, taking care of patients. This situation could only arise due to a failure of leadership, and lack of a firm directives given to IT support departments. We’ve let them stray from their task, because we didn’t pay attention when we should have.
IT people, listen up now: your behaviour and your attitude, as I and most of my collegues have encountered it, is inexcusable. Don’t come to us telling us what we can or cannot do. Come to us only to ask what you can do to help improve healthcare, nothing else. And I’d strongly advise all healthcare staff to adopt the same attitude. We have a serious and dangerous attitude problem here, and it’s time IT support got a grip on reality and started supporting us instead of playing “Animal Farm” and keep sabotaging healthcare.
I’m sure there are well-meaning and capable people in healthcare IT support in our provinces, and I love you all. But please, make yourself heard and noticed, will you?