IHE Cardiology Supplement Published for Public Comment

IHE Community,

Cardiology supplement  published for Public Comment

The IHE Cardiology Technical Committee has published the following supplement to the IHE Cardiology Technical Framework for Public Comment on April 22, 2011:

·        Cardiac Imaging Report Content (CIRC)

The document is available for download at http://www.ihe.net/Technical_Framework/public_comment.cfm. Comments submitted by May 23, 2011 will be considered by the Cardiology Technical Committee in developing the trial implementation version of the supplement.  Comments should be submitted using the online forums at  http://forums.rsna.org/forumdisplay.php?f=249.

HITsm T1: To what extent should patient involvement influence the advancement of HIE?

To what extent should patient involvement influence the advancement of HIE?

That was the first topic from last night's #HITsm chat.  Sparked by, of all things, this article.  My brain exploded, my blood pressure quickly rose and I almost asked "What planet are you from?" (See what I did write).  The discussion devolved from there into one about security and patient consent and never really rose above it with a few rare exceptions.  The last calm thing I'll say in this post is that this is my personal hot button issue, not the opinions of anybody I work for or am otherwise involved with in any way.

Patients NEED access to their data.  This is both a story my tweople tell, and one I know quite well myself.

A few years ago, my mother-in-law wound up spending her vacation weekend; instead of with her daughter; in the hospital, raving, with a 104 degree fever.  The hospital staff couldn't figure out why the antibiotics weren't working because they didn't get the information that she was immuno-compromised until Monday when her primary care physician told the hospital a few hundred miles away that she'd just gotten off of 6 weeks of chemo.  [Her family learned from that experience quite well.  Between that any many other events, we got into the habit of asking her, and her healthcare providers routinely about her CBC results.  Oh what a challenge that was for her provider's at first.  But Mama was stubborn like bull.  She got the hospital security officer to sign a note posted above her bed at one point:  "Please share Mrs. ____'s blood test results with ANYONE in the family who asks".]

Then there was the time that my step-father spent two days in the hospital up my way because they weren't sure his pacemaker hadn't moved, and couldn't get the images until... you guessed it.  Monday when Medical Records opened up.

That's just a few stories from my family, and ones with happy endings at that.  My friends in Health IT all have stories of their own, and some of them ended not nearly so well.

This is pure BS.

In both cases I reported, the hospitals had the necessary consent to access and share the data [AND both my sister-in-law and my mother had power-of-attorney and knew how to use it].  In both cases, the patients received expensive, unnecessary, and while we are at it, POOR care.  In one case, the lack of care related to missing information introduced a mildly life-threatening risk.  In the other case, it was mostly a miserable way to spend a weekend that resulted in a delay in obtaining the right treatment.

In both cases, the data wasn't available because it needed to be accessed by a person, instead of using Health IT to exchange it.  Hell, even a FAX would have been fine.  The problem was that there was nobody at the other end who could get TO the data to even FAX it.  In both cases, the people needed worked "normal shifts." That means that patients who don't get sick on their schedule get stuck better than half the time waiting for an office to open.

If you truly want patient-centered care, don't hold my (or my family member's) data hostage to LOUD and mostly useless discussions about security and privacy.  There are privacy and security laws on the books.  Enforce them.  There is privacy and security technology and frameworks out there.  Use them.  Stop making me wait to get my damn data.

In my own experience, it takes at least three times longer to work out the legal framework in an HIE that it does to actually implement the security requirements.  And the same basic technology shows up over and over again.

Please, "don't invent the wheel over and over and over again"
Instead: "identify what's working, where it's working and adopt it and adapt it."

A million dollars on a consent pilot?  What a waste.  Go inspect and explore what's been done -- over and over and over again.  Then see what works, and adopt and adapt.  There are at least 10 HIEs out their that have already done consent -- using standards.  Check it out.

If you recognize the quote, then the irony of where the story came from that started off T1, and my focus on trying to bring it back to being patient-centered should make it readily apparent why I'm so angry right now.

I'll put it quite plainly.  The number one issue for patients (and consumers) with regard to their health information is ACCESS.  The second issue is SECURITY. If you can remember that order of priority, all else is easy.  But we forget.  And if you don't believe me, take this simple test:  Ask the next HIT expert you see what the most pressing issue for patients is about their healthcare information.  I'll bet most of them get it wrong.

---

Update: July 30th, 2011
Here's Regina's rendition of this story:

Are Patients Consumers? Yes and No

"When I use a word," Humpty Dumpty said in rather a scornful tone, "it means just what I choose it to mean -- neither more nor less." - Lewis Carrol, Alice in Wonderland

This is not a standards related post, but it is a healthcare related one.

Paul Krugman wrote for the New York Times recently wrote about patients not being consumers. His article comments on the Republican backlash against the Independent Payment Advisory Board.  I agree with a good number of his points (I'm pretty much a liberal independent), but the title: "Patients are not Consumers" misses the mark.  Others have written on the same topic.  Jackie Fox wrote on patients not being consumers on KevinMD nearly a year ago, and Dr. JC writes something similar in 2007 on Brain Blogger.

Lets look at a few definitions.

1. A person who purchases goods and services for personal use. -- Google
2. Consumer is a broad label for any individuals or households that use goods and services generated within the economy. -- Wikipedia
   
3. An individual who buys products or services for personal use and not for manufacture or resale.  -- Investor Words
   
4. One that utilizes economic goods -- Merriam Webster
5. A person or thing that consumes -- Websters New World College Dictionary

And then there is the origin of the term "Consumer", whose earlier sense comes from "squanderer".

All of the definitions pretty much agree on "use" or "consumption", and most agree that it applies to individuals.  Economic definitions seem to distinguish between use and "purchase".

So, am I a consumer of healthcare?  Under my current (high deductable) plan, I do pay for the first few thousand dollars of it to providers of healthcare goods and services.  I  fit into any of the definitions above.  When I was covered under a different plan, I only paid for a small part of my care (at each even).  I'm not really sure I qualified as being a consumer then.  So, I am now, but not everyone is.

Is the Federal Government a consumer of healthcare?  It pays for it.  It receives some benefit from it, although not direct.  By some definitions it could be argued to be one, by others not.  Given that we fund the Federal government, we also are beneficiaries of these services but not really consumers.

Is my employer a consumer of healthcare?  It picks up the tab for a significant chunk after my deductible, although I'm still on the hook for some of it.  They receive some benefit from the expense (a happier, healthier, less distracted employee).  If the government is a consumer, employers are as well.

Is my payer a consumer?  Not in my case, but likely in many others where the payer is providing the "insurance".  My payer isn't spending their own money in any way, but those that take on risk (e.g., my employer) do.  They accept risk on behalf of their "customers".  Payers also negotiate the best deals they can on to benefit their stakeholders (which is not necessarily the same as their consumers).

From a different viewpoint; As a consumer of a TV set, an airline ticket, a car, or a good dinner, I have quite a bit of choice.  There is also a great deal of information that I can use to help me make my decision.  I can pick an airline based on where they go, their schedule, price and services.  I can easily compare one airline to another.  I can check out the quality of a TV or automobile, check prices, determine features, et cetera.  I can also check out the quality of a dealer or distributor, et cetera. I can check the ratings on service, food quality and price on just about any restaurant from numerous sources. As a consumer, I can choose to check out manufacturers and their distributors, or I can just buy what looks good to me.  My dollar, and my choice.

As a patient, I don't really have those choices.  I cannot easily check the quality of a surgeon or other specialist against any readily understandable benchmark (there are ways to do it in my state, but they aren't easy to find out, and the ratings aren't as easy to understand as something I would find in Consumer Reports).  I cannot figure out how much care is going to cost me from provider A or provider B for a specific condition.  Recently I spoke with a healthcare provider about what a visit would cost.  Nobody in the office could even give me a ballpark figure for what a visit would cost me.  I needed to speak to a specialist in billing to get that information.  My doctors don't have a good idea of what the costs of care are.  They cannot tell me the difference in costs between two tests that would give them additional information.  Some can probably tell me the difference in result quality, but even that is arguable given some of the reports of innumeracy.  My payer cannot even help.  They have a website that can tell me costs from certain providers for certain conditions and treatments, but to use it, I need to know both my diagnosis and what services they are going to bill me for.  And I won't know that until after I see them.  So even though I have been given a list of five specialists by my doctor in a recent visit, I cannot readily compare costs.

When I deal with a plumber or roofing contractor, I can talk to them about my options: quality, features and cost being the operative components.  When I deal with my doctor, I cannot easily have the same kinds of conversations, even though I try to do so more often now.  My healthcare dollar is important.  I want to get the best value I can for it overall, not just for a single problem, but for my entire health.
 
From this perspective, patients are not consumers.  We don't have the information that a consumer would have, and I'd sure like to have that now.  The argument that vouchers will change that doesn't hold water for me.  High deductible plans were supposed to have a similar effect, but they've made it no easier for patients to figure out how to best spend their healthcare dollar.

Trouble Finding HL7 V3 Codes in NQF Quality Measures? I know why...

Are you having trouble finding the codes listed in the spreadsheets supplied by CMS for the NQF Quality Measures?  I was recently contacted by someone who was looking for immunization reason codes from the  spreadsheets in the second download.

The spreadsheet rows affected look something like this:

standard_taxonomy	standard_taxonomy_version	standard_code_list
HL7	3.0	21703, 21704, 21738, 21745, 21747, 21815, 21990, 22259, 22261, 22855
HL7	3.0	14880, 15985, 19729, 21708, 21710, 21741, 21743, 21746, 22260, 22851
HL7	3.0	19730 , 19731, 19733, 19734, 19735, 19736, 19987, 19988, 19989, 19990, 21408, 21493, 21568, 21706, 21707, 21709, 21728, 21729, 21730, 21731, 21732, 21733, 21734, 21735, 21744, 22023, 22024, 22165, 22166, 22167, 22168, 22169, 22857, 22858, 22859, 22865, 22866, 22867, 22907, 22909, 22911, 22912, 22913

Look all you want in HL7 Version 3 Vocabulary and you'll have trouble finding these code values.  Why?  Because those aren't the HL7 Code values nor is the code system correctly identified.  Yes, they do come from HL7 Version 3.0, but which of the umpteen code systems defined in V3?  (Note:  I'm using the HL7 Ballot web-site here for educational purposes, you should really be using an HL7 Normative Edition Publication to view the published codes).

The answer is that it can be found in the HL7 V3 ActReason Code System.

So, where did the numbers come from?  These are the Internal identifiers HL7 uses to maintain the vocabulary, found in the column titled "Definition, Properties and Relationships" rather than the appropriate codes found in the "Concept Code Column".  Look at 21703 for example.  That should actually be INEFFECT in the ActReason code set.

The Standard Taxonomy column should indicate that the vocabulary comes from HL7 ActReason so you know which code set it comes from.  While this is part of the HL7 Version 3.0 standard, the specific version of the code set is NOT 3.0.  I'm assuming that NQF is using the HL7 2010 Normative Edition.  If so, the version should probably be 2010 or something like that.

Now that you know how to do the mapping, there's something else that should also have been done.  The spreadsheets note the copyright for CPT®, LOINC® and SNOMED-CT®, but should also acknowledge the copyright of HL7 on the Version 3 codes that they report, and obtain appropriate permissions to use them.

Not Fully Baked

My daughters like Pineapple Upside-Down Cake, especially for breakfast.  The first time my wife made this, she made it up because she didn't have all the ingredients called for in her cookbook to make it from scratch.  She made it using yellow-cake mix, fresh pineapple, brown sugar, and maraschino cherries and a square cake pan.  It took about two hours to finish, instead of the 45 minutes that just mixing and baking the yellow cake would have. We discovered that it wasn't done when we went to cut and serve the cake and discovered that the inside was quite runny.  Time was short, so we decided to do something else for breakfast.  It still had promise, so we put the cake back in the oven instead of throwing it out.  We wound up having it with lunch.  It was yummy.

We aren't sure why it needed 1.5 hours in the oven, but there was a pretty good test we could use for done-ness.  If the toothpick came out clean, it was done.  The next time my wife made it, we planned for 1.5 hours of baking time, and that's about what it took.  Our experience in doing it once before was used to estimate how much time it would take to do it again.

We need new standards.  That is a key message behind the ONC Standards and Interoperability Framework initiatives.  We need mature standards.  That is a key message from Doug Fridsma to the HIT Standards FACA found in John Halamka's blog post of yesterday.  I'm reminded of a cartoon that John Moehrke tweeted yesterday where two parts of an organization are not in sync.

The Direct Project was planned to take six months and instead took nearly a year.  It's maturing quite rapidly compared to other efforts, but still, maturity takes time.  That's an obvious syllogism that seems to have been lost somewhat in the aggressive development activities going on in the Standards and Interoperability Framework.  Project planning 101:  If it's something new that's never been done before, it needs even more time than you probably think.

The CDA Consolidation project got 3 months to complete development of model driven tools and to use them to produce an implementation guide.  The project completed the required document on time, but as I dig into the results, it's still quite runny inside.  If this was a green field, the document would be great.  But it isn't and the document doesn't outline what is different from the C32 Version 2.5 and C83 Version 2.0.  So until I analyze those changes, I won't know what must change in an implementation to know what can be reused.  That analysis of the new requirements for an implementation is a struggle for me, and if I'm having problems with it, I'm certain that others are either equally struggling or even just plain stymied.  If they treat this guide as a new set of requirements, it's simply back to the drawing board and time to start over.  It's only when we can reuse what we did before that it becomes better.  The current specification also did not meet many the requirements that the Documentation Workgroup outlined at the start.  Nor, in my opinion, will it meet the success metrics outlined on the project page as it stands today.  The model data isn't delivered, nor are schematrons, UML models, nor tooling to support import, creation and validation.

As critical as I am, the CDA Consolidation project still has great promise.  I think we are going to need to put it back into the oven before it will be ready to serve.  It may or may not be ready in time for stage 2, but if we wait, it should still be yummy.

Physician Answer Syndrome

I was recently reading a post about physician use of clinical decision support titled "Do Decision Support Tools Make Docs Look Dumb?"  What I find interesting about this is that I routinely Google it, or look it up on the web, or in a particular document.

The volume of information that I am expected to be conversant with is incredibly large and includes: Programming syntax details in at least 20 different programming languages, software library capabilities in over two dozen freely available or licenses libraries, the operation and automation of about a dozen different tools, how to administer two different database servers made by different vendors, how to administer a web server, three different UML modeling tools, how to administer an operating system, and how to implement about 100 different standards and profiles.  That's probably not as complicated as being a doctor, but it's still pretty complex.

I try to keep enough of that in my operating memory to do the day to day stuff, and to know where to go when it's no longer day-to-day.  When I don't know, I also know a bunch of others like me who I can ask.

I'm not ever embarrassed at having to look something up, but I'm also rarely ever put into a position of need by someone who has no understanding of my particular art.  Even on those occasions, I'm still not embarrassed.   It's fairly simple to explain that I needed to check something out, and to explain what I discovered.  The translation of the user's need into an appropriate query, and interpretation of the results of that query into something that the end-user can do is quite valuable.

There's an old joke I've heard a bunch of different ways applying to a repairman who is called to fix a problem.  He listens very carefully to the customer who gives quite a detailed description of the problem.  After about 10 minutes of listening, he says, I know what your problem is, and then goes over and makes a very simple adjustment.  His customer is very happy, until the repairman issues the bill.  It's $55 dollars for no more than 30 seconds of work.  The customer is outraged.  "This bill is way too much.  You cannot charge me $55 for less than a minute's work."  The repairman agrees.  "You're right.  Give me back the bill."  He scratches out the $55 and writes the customer a new bill and hands it back.
   Adjusting the Thingamabob:  $1.00
   Knowing that Adjusting the Thingamabob would fix it:  $54.00
The customer paid.

Another great story is physician related.  A doctor has an extremely difficult case.  He calls on a colleague who listens to him go on about the case.  After quite some time, his colleague motions to the doctor to wait, and then steps out of the room and returns with a book.  He reads the doctor the answer from the book, and then closes it and returns it to where he got it, returning back to the room where the doctor is still sitting, now dumbfounded and outraged.  "You are a farce!  You didn't know the answer, you simply read it to me from a book.  You are supposed to be the best in the field.  How can you do that?"  His colleague says "Follow me" and leads the doctor to a large room filled with books.  He waves at the room expansively and then turns to the doctor and says, "Now, which of these books holds the answer that you need?"

The point is, knowing how to solve the problem is what is important.  That includes being able to access the right information that helps you find the solution.  It shouldn't matter whether its a healthcare problem, a computer problem, or a car problem.

If providers find demonstrating that skill to be embarrassing, perhaps they may suffer from a variant of another disorder, perhaps we should call it "Physician Answer Syndrome".

On being a HealthIT Mento(ree)

Last night's #HITsm chat brought up the topic of resources for people entering the Health IT workforce.  One of the most amazing resources that any person can find is a mentor.  It's a particular and often peculiar relationship that benefits both parties.

One of the things that I learned late my IT career is that Standards Development Organizations like HL7, profiling organizations like IHE, and HIT professional societies like HIMSS offer their members access to some of the most skilled professionals in Health IT.  And it was with couple of those that I developed a mentor/mentoree relationship around the same time.

I wouldn't be in the role that I'm in today if it hadn't been for my mentors.  I've been fortunate enough to have several, including some that I went to school with, others that I worked with directly, and others who worked for a competitor (for almost as long as I've known them).  I've also been a mentor on several occasions that I can count.  In at least one case the role flip-flopped back and forth several times.
  
From a Health IT perspective, I can tell you that I'm both proud and to some degree, even a wee bit jealous of those I've mentored.  The reason I'm jealous is because they are so much younger than I was when I got engaged in Healthcare IT and found my first mentor since my college years.  In at least one case, I managed to find the "Perfect Student", one who absorbed everything I had to teach and surpassed me quite rapidly.  I think he's now a VP of software development (I'd have to check linked-in).

Being a remote employee these days, it's very hard to find a mentor "in-house" as it were.  For those that aren't remote it can still be challenging because you have limited access to skilled senior-level people. I've seen many organizations try to formalize the mentor/mentoree relationship in a program.  Most of them simply don't work because you cannot force it, there needs to be the right chemistry.  I suspect the programs that do work focus more energy on making sure the right opportunities arise to develop the relationship without trying to force it.  As a new member of the Health IT workforce, don't wait for a program to offer you one.  I encourage you to join an organization like HL7, IHE, or HIMSS and get engaged.  It is through those engagements that you will learn more (possibly than you ever wanted to know) about the field that you've entered.  And if you are lucky (like I was), you may even find a mentor (or two) who can help you navigate the field.