Europe’s turn to waste money

The Health IT Nerd has spies all over Europe, so I got showered with notifications when a new report was released by the EU last week.

These reports are nothing new. Governments need to commission these reports every so often, to make sure that they’re not on track in their programs. And it doesn’t matter which government, it always works the same way. The government announces it wants a report, and invites all and sundry to bid to do it (usually this is called and RFP or something similar). Then the government ranks the bids, and either picks the one it was going to pick anyway, or chooses the cheapest, from the dumbest least informed clown that bothered to respond.

If it was a pre-selected winner, then, surprise: the report spins things how the government wants. Or, if it’s the cheapest respondent, then the report might say anything at all. If it’s sufficiently crap, the government throws it to the wolves (whoops, I mean the relevant industry), and everyone feels better for having canned the crap that the government needed canned anyway.

This happens everywhere in every industry. I think it gets taught in Government 101. But everyone plays the game dutifully, because you never know quite which variant of the game is on until later. Hindsight is 20/20 (or maybe just 20/10 or something).

In spite of that, I’ll bet all the monopoly money I can find in my hovel that this one is being thrown to the wolves. One thing you can be sure of: it’s utter crap. Check the extensive and thorough preparations undertaken to prepare this report:

In November 2007, empirica conducted an online survey of e-health experts from ICT industry, user organisations, public authorities, university and research, SDOs, and consultants. 94 experts responded

94 experts? Wow, that’s thorough. For all we know, 90 of them were French, and the French don’t know anything about anything. Also, it lists OpenEHR as a standards organization. Now while the openEHR guys seem to be trying to do something useful, they ain’t no standards group (actually, I think I'll make a report of my own about them in the future). 

If I hadn’t already had turkey for thanksgiving, this report would’ve done nicely for a late consolation prize.

So, let’s see what their extensive research yields in terms of conclusions:

Current situation in e-health standards: Nearly all interviewees agreed that there is a lack of widely used e-health standards.

There’s a lack of widely used e-health standards? Have they not heard of HL7? Or perhaps “widely” has a different meaning in Europe? So maybe the respondents were French after all.

Impacts of current situation: Nearly three quarters of the respondents indicated that within a single health service provider the overall situation is supportive, but the majority found the situation unsupportive for cross-border care provision.

Well, the outcome certainly wasn’t the ability to write meaningful sentences (this might demonstrate that they understand the essentials of interoperability properly after all). 

Barriers to adopt common e-health standards in hospitals: Hospital IT managers may first of all find internal process functionality more important than commonly used standards.

Well, duh. That’s exactly the real problem (maybe I did respond to this survey after all). Everyone in the industry is in the same boat: my process functionality is more important than commonly used standards, and I’m not going to waste money on them. 

Hang on: “waste money on standards”?

Isn’t the whole point of standards that they save money? Well, yes. And no. Rather more no than yes, unfortunately, in the healthcare industry. If everyone adopts standards over the industry as a whole, then they will pay off. But only if everyone does. It’s a two-edged sword.

For vendors, in the absence of standards, they get paid to do the same work again and again – nice safe money. But that sucks. No one enjoys it, and it’s damn hard to hold on to staff as it is without making them do the same thing again and again. For care providers, adopting standards might offer the ability to purchase cheaper software, but it also means behaving in a standard fashion. Where’s the business ego differentiator in that?

If you look across other industries, and see which ones have rapidly adopted standards, it’s the ones where the adoption of standards has drastically increased the size of the whole pie, so everyone benefits. But in health, the pie is already as big as it can get. So the result of using standards is just to reallocate parts of the pie.

It’s not for lack of trying, but the governments can’t impose proper standards on the industry, because the industry just doesn’t want them across the board. It’d rather adopt them in a piece meal fashion – the patient will pay, one way or another.

And how can healthcare get away with this? Politics. It’s always politics. See, doctors have unbelievable power in society, and they’re tremendously conservative when it comes to how things are done. Sure, that’s got it’s bad side, but hands up anyone who wants to volunteer to be the guinea pig for a new way of doing things. And everyone, even El Presidente or whatever they’re calling themselves this year, eventually everyone is going to be a patient.

Anyhow, back to the report. It seems to me that they demonstrate a complete knowledge of the current state of the industry when they say:

In January 2008, the US Department of Health and Human Services recognised certain interoperability standards for health ICT which federal agencies have to include in procurement specifications for certain fields of health. This could be a step towards mandatory use of a confined number of standards for principal e-health applications. Such a regulation by the US government could have considerable impacts in the EU. In order to prevent unfavourable developments, the EC and the Member States may be well advised to develop a common strategy and roadmap for e-health standards development.

Let’s see if I understand this correctly: USA did something, so in response, the EC and it’s member states better go and do their own thing. 

Interoperability: it’s all about the people. And it doesn’t look like there’ll be any change soon.

What we have here is a failure to communicate

IT is the great white hope for healthcare, the healthcare administrator’s wet dream: we’ll be able to reduce the cost of this monster using IT and improve service at the same time. And like all fantasies of this type, what you get in the cold light of day just isn’t quite the same – that sensuous young woman turns out to be a withered old hag with a sour disposition (or, for my female readers – if I still have any: that buff young man turns out to be a crotchety old jerk with a hairy back).

One of the principles is easy to grasp. Anywhere between 50% and 80% of healthcare professionals’ time is spent tracking down information so they can provide proper healthcare. That’s right – that doctor who’s getting paid a million smackers a year: he spends most his time finding the right pieces of paper. That's not all - almost all of the preventable deaths that occur relate to missing information one way or another.

So, if you stick all that information on computers, and they can talk to each other, then the information will just be right there, exactly when and where the healthcare professional needs it. Magic! And we could get twice as much work for the same amount of money, and with less “totally negative health outcomes”. So you can see how seductive this idea is – up there with the supermodels. Also, see the Turkey I had for thanksgiving.

Actually, it would be magic if it worked that way, but the real magic is in the innocuous words “they can talk to each other”. In the healthcare IT industry, this is called “interoperability”, and it’s the Holy Grail. It bears startling resemblance to the Holy Grail too. Not only has no one ever seen it, we don’t even know what it actually is.

In order for computers to be able to talk to each other, they need to understand each other in a deep and meaningful way. At least that’s what the experts say.

I’m not so sure. I’m married, and I know that once you understand each other, you no longer need to talk anymore. Yeah, yeah, everyone laughs when I say that, and pities Mrs. Health IT Nerd. And I mean, I understand their pity, because I know me even better than they do, but they’ve missed the point: Mrs. Health IT Nerd and I are never going to understand each other (any of you that are married will know exactly what I mean). So our lives are full of interesting times, and we are forced to keep talking to each other.

So this is what makes interoperability so much fun: we’re never going to understand each other fully, but we have to get along anyway. I think this is one of the craziest things that happens in health IT, that the industry so seriously misunderstands what will enable interoperability, and what the results might be.

Classic interoperability theory says that in order for two computers to talk to each other, you need the following things:

• A transmission channel between the two (usually, but not always, bidirectional)
  
• A common set of terms (words) with meanings that both parties understand
  
• A common set of information models (grammar/story plotlines) to allow the pieces of meaning in terms to be assembled into a coherent larger structure
  
• An agreed process (who says what when, and what happens next)
  

This is called the “interoperability stack” (I presume “stack” like as in “Dad, I totally stacked your car”).

It’s the same requirements for humans to talk together, on any scale, from my two small kids arguing about who gets to be the doctor and who is the patient, to diplomats from two large countries resolving which side of the border their soldiers will get to acquire their need for emergency healthcare on.

Actually, that stack above is incomplete. There’s something else that most interoperability wonks don’t stress, but I can’t stress enough:

• The two parties need to share an agreed context of operations
  

Like Mrs Health IT Nerd and I, no one knows how to even agree on what this “context of operations” thing is, how wide and deep it is.

Take a simple case: in Isaac Asimov’s Foundation, one of the characters says: “Violence is the last refuge of the incompetent”, by which he means, only the incompetent will use violence because it doesn’t solve anything.

Well, I have a friend (Yes, I *do* have one), and he’s a wingnut, so he says that this means that competent people would have resorted to violence long before it’s time for the last refuge. While that interpretation is the polar opposite of the one that was intended, the actual words and the grammar are understood the same way. It’s the different background values people use when evaluating the meaning of the phrase that make the difference here. (Which interpretation is correct? It’s not like it matters for this column, but I figure that what happened in Iraq - or any other war - shows the statement is wrong and stupid however you want to read it.)

This is why interoperability is so hard: there are so many layers to understanding. A whole industry exists to define interoperability based on standards that provide meaning for that stack, a whole alphabet soup of them, such as HL7, CEN, ISO, IHTSDO, ASTM, ANSI, WHO, W3C, OASIS, WS-I…. a never-ending profusion of standards bodies. You know what? These standards bodies, these definers of interoperability, they can’t even interoperate amongst themselves, so it’s the proven-blind leading the probably-blind.

These standards are all going to fail. Well, not so much fail (though it might be best if, umm, if we all don’t actually look too closely at them when we say that), as not quite deliver all the things people are demanding from them – just small things, like life, the universe, everything, and also world peace as well. These things won't happen, but there will be some outcomes: life will get better, healthcare will improve. But you know should know by now what happens when healthcare improves: costs go up; so even if these interoperability standards deliver everything anyone dreams of, the outcomes won’t be what they desired in terms of cost-cutting.

Even if the healthcare administrators and those who pay for healthcare (i.e. you!) scale back the expectations of what interoperability can achieve to something reasonable, these standards are not going to deliver, because they’re all based on the expectation that if you solve the technical problems, interoperability will just happen.

It’s people who insist on doing things differently, calling the same thing by different names or vice versa. It’s people, who, given the same patients, the same healthcare problems, and the same computer systems, find completely different ways to achieve roughly the same outcomes. And for all these people – both healthcare professionals, and healthcare informaticians (horrible word!): there’s my way of doing things, and all the wrong ways to do it. There’s even a step beyond that, people for whom there’s my way of doing something, and all the other ways that I am dedicated to destroying. These people are methodological terrorists, and they are attracted to standards. This is part of why the healthcare standards wars are such fun.

So the fundamental problem of interoperability, of getting the information to the right person at the right time, is the first and last steps – getting it out of the first person who has it, and into the other person who needs to understand it in the appropriate context, how it relates to all the other information they have. Compared to these two problems, everything else is just plumbing, though we can’t even get that right. Interoperability is about people, not technologies.

Perhaps the healthcare industry isn’t so stupid to spend below average amounts on IT after all.

However we’re clearly going to spend what we do have on chasing the chimera of getting computers to fully understand healthcare – that is, us. Well, that will never happen.

So I think that we need to start focusing on enabling interoperability without trying to understand each other. See, if we all focus together on trying to achieve something perfectly useless, there’s a reasonable chance that we might actually succeed, especially since we've already achieved one of the desired outcomes – we’ll never understand each other.

The Mightiest Champion of Them All

Roll up, Ladies and Gentlemen, Roll Up, Roll Up!

Welcome to the grandest heaviest longest fight you’ll ever see. The fight is being fought between two implacable foes, two of the heaviest grandest contestants you’ll ever see, marshalling their entire forces on the side of good. At stake is nothing less than the very heart and soul of the people of the earth. You’ll never see anything like this again: a fight of good vs. good, a war of attrition with both sides grinding each other slowly down with no quarter given.

People laugh at cricket, such a slow game with weird rules. And the rules are weird, almost as weird as any country’s legal system – with the same kind of happy outcomes too. Seriously, a game that lasts five days? How can anyone be interested in that? But, you see, the longer the game lasts, the tougher the tussle, the more there is at stake. Imagine that your team has spent five days building a winning position, and then, right at the last moment, you drop the ball? That’s real drama – the longer and slower, the meaner it gets. Anyone living in one of ex-British colonies – wish I could write that with the proper upper class pronunciation – will have seen the headlines that follow when their team loses.

Well, this fight I’m talking about has been going for more than a generation, and the losing side has just struck back for the first time.

In the one corner, we have the Cardiologists, with their array of complicated and expensive diagnostic machines (positively military priced, in fact), and their flag-ship open heart surgery campaigns. Over in the other corner, ragged and beaten, but still fighting hard, it’s the Oncologists and their friends, with their terrifying array of “therapies” lead by their nuclear, chemical and biological weapons. Yes, that's right folks, just like some other fight that’s currently taking place, the side with the nuclear weapons is losing.

Between them is their boxing ring, the canvas that they fight on, the people of the earth. Somewhere between 70 and 85% of all the people on earth die from heart/vascular disease or cancer. (Aside: You know the drill: lies, lies, and damn statistics. How much of a lie is this one? It all depends who you listen to, how you count, and how definitions are done.)

The cardiologists landed the first really effective punch back in the sixties, and open battle has been on since then. It seems that they didn’t really know exactly how devastating a thrust they were making when they declared war on cholesterol back in the 1960’s, didn’t know just how much a blow that was to the oncologists. Let’s check a replay of the action back then.

By the early 1960’s, enough evidence had accumulated to show convincingly that cholesterol – specifically, dietary cholesterol and fats – was one of biggest causes of heart disease. Heart disease alone was the biggest people killer, even ahead of the World Wars. And they declared war: not only with steady improvements in weaponry, but also in some long, slow, hearts and minds things: in this case, dietary cholesterol. That’s right – they declared war on all the good foods, the stuff that we really like. Like my favorite food, fried chocolate bars (it’s got all the key food groups all wrapped up in one package - sugar, fat, salt, chocolate. What’s not to like?)

The grand assault on cholesterol was much more effective than they hoped, a real knock-out blow. Over a forty year period, the rate of most forms of heart disease has slowly but surely dropped, and just as significantly, the age at which people start having problems has slowly but surely been rising. So – a great outcome - people are living longer and better.

As a result, they started dying like flies from cancer. See, if your ticker lasts long enough, and nothing else goes wrong, you’re going to get cancer. The older the body, the more likely it is to contain small amounts of cancer (and a big hello to my weird friends the autopsy technicians). It’s just a question of time until one of the little cancers cuts loose and tries to take over from it’s host: you.

So the unexpected outcome of people not dying from heart disease was that the rate of cancer started rising. It’s rather a pyrrhic victory for two painful reasons.

The first reason is that dying from cancer is a horrible way to go. The terrifying NBC weapons-of-mass-desperation that the Oncologists use against the tumors are bad enough, but losing is even worse. People forget just how a relative died if the ticker gives out, but they don’t forget cancer, no way – not that long slow horrifying decline to a painful death.

The second reason is that for all the dizzying expense of the Cardiologist’s diagnostic hardware and spectacular operations, they’re just cheap dates compared to total cost of treatment for cancer.

So the Cardiologists won the first round, and we’re still paying for it now. That’s right: healthcare is so screwed up that the price of a victory is an increase in costs. Note also another consequence of the Cardiologists’ victory: more Oncologists and less Cardiologists. There’s nothing else like healthcare for producing perverse incentives.

Well, the Oncologists have just struck back! At a meeting of American Cardiologists last month, it was reported that for the first time in fifty years, the number of people dying due to heart disease has gone up (no apparent on-line reference to this, though I found this).

There’s lots of reasons why the rate might be going up, but one contributing factor must be that the rates of death due to cancer are dropping. The Oncologists have been fighting back: early diagnosis, more targeted treatments, the same kind of preventative war against cancer risk factors as the Cardiologists’ war on cholesterol. And they’re starting to make real progress. You can check out this summary for more information in careful government-type language (as in, boringese. Translated for the rest of us it says “Yay! We’re starting to win! Give us some more money, or you’ll die horribly!”).

So, the Oncologists are doing well, and this is magnificent news for all of us.

Except for our wallets. Welcome to the healthcare system, where the consequence of better healthcare is more expense. As long as the Cardiologists and Oncologists are duking it out, trying to run their statistics down, they’re going to spending more of our money doing it. And how can we say no? Do you even want to?

And as they get better, the population will get older, and that's a whole different ball game, one that makes the ticket price for our current fight look positively family-friendly.

More old people who don’t contribute to the economy, what are we going to do with them all? How can we look after them? I’ve got a great idea: you look after my old folks, and I’ll go surfing (on the internet, not the real thing).

Everyone knows that while we can’t afford to buy or provide unrestricted healthcare now, that's nothing compared to where we’re heading. It’s common to blame the baby boom, or falling birth rates. But I say the biggest factor of all is the improvement in positive healthcare outcomes resulting from the Cardiologists vs. the Oncologists.

So that’s how it’s gone in the first world, the so-called “civilized” countries. Actually, some European countries didn’t buy into the whole population anti-cholesterol thing at first, and didn't get the population health benefits till later – but they’re catching up. And in fact, the rest of the world is rapidly catching up, some trading off between different diseases, but ending up with the same outcome: if you save someone’s life, that means that they live on to get sick with an even more nasty and expensive disease. From the perspective of a healthcare system, this is what should be known as a “totally negative healthcare outcome”.

Well, I think that the time has come for the governments to bring back cholesterol. It’s my new public health policy: for the first 50 years of your life, eat well, keep sober, stay fit, have your two kids, be good. Then, on your fiftieth birthday, go on a big spree for the rest of your life. Eat whatever you want, stop exercising, drink as much as you can. Hell, sleep around as much as you want. Really enjoy your twilight years. And then, when you die in your mid-sixties, it’ll be quick and painless. And most importantly, cheap. It’s just a matter of thinking of your children.

Like that’s going to happen.

So forget the Cardiologists vs the Oncologists: that’s just a side show. The real champion, the mightiest of all, the one that will always win all the fights: that’s the healthcare system. It’s rocket science, baby, the only way is up.