When National Informatics Infrastructure Fails

We had an interesting discussion on The SANER Project call today.  One of the issues that came up was how to get the trigger codes from RCKMS (the Reportable Condition Knowledge Management System).

As a former employee of an EHR Vendor, I'm well aware of VSAC (the Value Set Authority Center) as a source value sets (I also played a role in writing the HIT Standards Committee recommendation for the creation of VSAC).  

As an Informaticist, I'm also well aware of LOINC Value Sets and SNOMED CT Value Sets for COVID that many have published.

As an Interoperability policy geek, I am also familiar with the ONC Interoperability Standards Advisory COVID-19 content.

As a highly educated expert, I CANNOT, for the life of me tell you which of these is the most authoritative content to use for COVID-19 reporting, either for what had been reported to NHSN, or presently for HHS Protect, or for eCase Reporting.  I do know enough to build a pretty damn good value set of my own for a system that I'm responsible for developing, but that's NOT what I want.  Developers don't need more work, we need experts to do their work, and make it readily available for others, and not just to publish it, but also to Market it for their jurisdictions so that it can be found.

I can also tell you that there's simply FAR too much data available to developers to let this situation continue.

Here are some rules for organizations responsible for these value sets to consider:

1. Figure out where the developers who have build systems get their information, and publish to those sources where they can get more.
2. Consider cognitive load on developers. Don't give them hard to remember web site names with 80 character URLs to get to the data they need.  Register a reasonable and memorable domain name.  Make the information easy to find. Remember that not every developer works for a hospital or an EHR vendor.
3. Remember that data distribution and publication needs different governance for access that data creation. If you have a system that supports creation, don't force a developer to get credentials for that system just to access data, just give them a URL.  Sure, give them a way to share an e-mail address for updates, but don't force them to create ONE more login just to learn what they heck they need to do.
4. Make sure that the distribution system has a way of reporting that data (especially value sets) using standards. Sure, CSV files are good, but come on, we're trying to work on modernization and APIs.  Put the same effort into your distribution mechanisms with respect to APIs and publication that you expect developers to put into the systems that will use the standards you are promoting.
   <rant>There's absolutely NO EXCUSE for a system designed to support FHIR to have an easily accessible CSV distribution mechanism for value sets, BUT not to have a FHIR ValueSet distribution mechanism.</rant>
5. Curation of a value set is a responsibility that steps up as demand increases. If you are responsible for curating a value set and the demand for updating it steps up due to an emergency.  Quarterly may be fine for things that change annually, but when the situation is changing week by week, changes are also needed week by week.  Yeah, I know, funding and all that ... figure it out, that's part of what being responsible means.

Of course all my International friends are simply going to tell me that the fundamental issue is that the US does not have a coordinated national infrastructure.  I can't argue with that.  Every agency is a plural of services, centers or institutes, I just wish ...

Who created this UI? It sucks!

As someone who writes regularly, I am often just as frustrated with Microsoft Word (or any other word processor I've ever used) as others report themselves to be with the user interfaces of EHR systems. Even Apple hasn't solved the problems I need solved.

How many clicks does it take to insert a figure reference to the figure below or above?  How much work is it to create a citation for the link I just inserted into the document?  These should be one button clicks, not the multi-step process they are today.

Why has this crime against writers continued to persist over decades? Nay, centuries... millennia even.

Word processor designers, here's a very clear specification for what I want:

Cross References

Given I have turned the option on, when I type the words "the figure|table|section below" or "the figure|table|section above" and there is a figure or table citation within the current section, insert a reference to it, or if a section, provide me with a list of sections to choose from that I can ignore if I want (so that if I continue typing, it just disappears).  And if I hit undo, treat the automatic insertion as the operation I want undone.

Hyperlinked Bibliography

Given I have turned the option on, when I insert a hyperlink, add new or reuse an existing citation source for the link if it already exists.  Find the individual author and creation date in the page data or metadata, or use a corporate author for the web site.  Include the URL in the citation.  If the URL includes a fragment identifier, find the text where that identifier appears and add it to the title of the reference (e.g., "Hyperlinked Biobligraphy in Who Created this UI? It sucks!).  If the link is to a page in a PDF (e.g., using #page=9 in PDF links) or other media format, treat it as a "document from a website", otherwise use "website" as the reference style.  Use the page title from the <title> tag in the page header.  Prompt me for missing information, but again, let this prompt dialog NOT interfere with my current work, and go away if I continue to type.  Same deal on undo here.  If I say undo, first undo the automatic insertion.

Finally: Stop turning on display formatting marks when I want to insert an index reference term.

   Keith

An impatient patient

There are days when the medical profession stretches my patience to the breaking point.

I called a provider today to ask them to forward my daughter's medical records to their new practice. The office manager reported that I would have to come into the office to fill out a records request form.  I told her that under HIPAA, I need not be required to come into the office to complete such a request. I'll note (but didn't go into that detail) that furthermore, since this request is for treatment, it does not even need a request from me, it could come from my daughter's new provider.  Why do I need to do this?  Because my current provider doesn't have access to the immunization registry that my previous provider reported her immunizations to.  Why?  I have NO clue!  And for this privilege of populating this providers knowledge tables, I will pay for a level 3 new patient visit, which is necessary in order to obtain an accurate physical examination from this new provider, but is somehow not covered by my insurance policy (although the physical exam is).

On the same day, I listen to multiple medical professionals go on and on (and on and on) about the value or lack thereof for "No Known Allergies", and why, if it is only temporally valid, need it ever be recorded.  Do these people even practice?  In a doctor's visit on Monday my wife talked to her provider on three separate occasions regarding her treatment, medications, et cetera.  And in between each of these discussions, the provider had seen another patient or looked at another chart.  Are providers so good that their memory of who among the 30 or more patients they see day has which allergy is correctly aligned with the patient in front of them?  Some days I cannot remember which call I'm even on, and my schedule looks nothing like a doctor's.  They are no more superhuman that I am.

And while I completely respect my Doctor's need for safety, would it really be so bad if, when stopping to ask me the same question for the 14th time in the last two years, he bothered to check to see what they already should know, and confirmed it, and any possible changes, rather than make me REPEAT and possibly forget something I said before?  I know this can be done well, because I've seen it done a number of times, by at least three different providers.  But I only see this behavior about 10% of the time.

And finally, if I hear one more complaint about how an EHR interferes with patient face time, I think I might just cry.  I've seen this done well too, with two different systems, by the same provider (my former PCP).  This is a skill, and you HAVE to practice it, consciously, until it becomes habit, or else you will develop habits that will make your patients dislike your behavior. However, don't blame your behavior on tools used poorly. Learn to use the tools well.  It can be done, but you have to THINK about it, and do so critically and consciously.

   Keith

The Medical Industrial Complex

I belong to a lot of different mailing lists.  The obvious ones are HL7 and IHE workgroups, but other lists relate to S&I Framework activities, AMIA informatics workgroups, and the Society for Participatory Medicine.  One of the things I find most interesting, and also the most frustrating about these lists is the sometimes ethnocentric bias commonly found.  Nobody is exempt from this (even me).

A recent term showed up on one of these lists: Medical Industrial Complex

Usually this term is used disparagingly. I find that each different list thinks about this term somewhat differently.

• Some think about it as "the vendors", referring to sellers of medical devices, software, et cetera (e.g., like my employer).  This often shows up from the perspective of providers, and sometimes the government.
• Others think about it as "the payers", referring to the health insurance industry.  Many times, this shows up from either perspective of providers, or patients. 
• Others think about it as "the healthcare providers", referring to doctors, hospitals, et cetera. This is most often the perspective of patients, although sometimes the perspective of individual providers dealing with institutional providers (hospitals or groups).
• Others think that a significant chunk of the Medical Industrial Complex is sponsored and controlled by "the government", a perspective espoused often by any group other than "the government".

The Medical Industrial Complex, or its constituents as an aggregate group (all of the above) are easy targets.  They are motivated by money (profit or savings depending on the role), not saving lives. They have no interest in the concerns of any other stakeholder, including the patient.  

The medical industrial complex is in fact too easy a target.  We oversimplify the situation in ways that rarely result in any problem being solved.  Claiming, for example, that "____ are against interoperability because it is not in their best interest." is simply divisive, and not useful.  Oh, and I've seen that sentence filled out at least three different ways.

Presently, the Medical Industrial Complex is a multi-player, zero-sum game.  That means where one group gains, another loses.  All of us reading this blog are players in this game in some way.  If the game isn't fun, what we need to do is change the rules, but that's going to require all of us in this thing that people call the "Medical Industrial Complex" to work together.  Yes, that means you.  What are you going to do about it?

     Keith

I letter I just wrote to a doctor in response to an incorrect medical bill

Dear Dr. _______,

I am returning this bill to you unpaid, as it clearly is for services not provided to my daughter based on the accompanying diagnosis code: 364.81 “Floppy Iris Syndrome”.  IFIS was first described by Chang and Campbell in the Journal of Cataract & Refractive Surgery in 2005 (see http://www-ncbi-nlm-nih-gov.liboff.ohsu.edu/pubmed/15899440 ).  Based on their description, this is clearly not a syndrome my daughter suffers from. This disease is diagnosed intraoperatively, typically during cataract surgery.  Since you are not treating my daughter for cataracts, nor did she receive any eye surgery, I am presuming that this bill and related charges are incorrect. 

As a result of sending this bill to my insurance company, my daughter will now have an incorrect diagnosis in her insurance record, which could result in denial of services later in life due to a pre-existing condition.

Thus, I am requesting that you correct the diagnosis, and send a new claim to my insurer.  Upon receiving a corrected bill with an accurate diagnosis, I believe appropriate adjustments will be made to your bill, and I will, upon receipt of an accurate description of services being billed for, pay them based on my insurers agreement.

Sincerely,

/s/

Keith W. Boone

Argue your limitations and they are yours

I'm having a [amusing | interesting | disheartening | great ] discussion over on Facebook with two Massachusetts doctors who are telling me how difficult it is to get information about the cost of treatment from payers.

Fortunately for me, unfortunately for them, MA state law effective January 1, 2014 states:

§228(a): Prior to an admission, procedure or service and upon request by a patient or prospective patient, a health care provider shall, within 2 working days, disclose the allowed amount or charge of the admission, procedure or service, including the amount for any facility fees required; provided, however, that if a health care provider is unable to quote a specific amount in advance due to the health care provider’s inability to predict the specific treatment or diagnostic code, the health care provider shall disclose the estimated maximum allowed amount or charge for a proposed admission, procedure or service, including the amount for any facility fees required.
(b) If a patient or prospective patient is covered by a health plan, a health care provider who participates as a network provider shall, upon request of a patient or prospective patient, provide, based on the information available to the provider at the time of the request, sufficient information regarding the proposed admission, procedure or service for the patient or prospective patient to use the applicable toll-free telephone number and website of the health plan established to disclose out-of-pocket costs, under section 23 of chapter 176O. A health care provider may assist a patient or prospective patient in using the health plan’s toll-free number and website.

Unfortunately for me, they probably still don't have a clue how to do this if the discussion I'm hearing is any clue.  This information is "difficult", hard to find, not complete, et cetera.

As my wife likes to tell me routinely, arguing for your limitations simply makes them stick, rather than producing any real change.

When I have a real health concern where this becomes an issue, I think I'll go tilt at that windmill for a while.

   Keith

Remember When?

Remember how almost nobody had a PC, and now everyone does?  Remember how nobody had a word processor or spreadsheet, and now everyone does?

How many of you remember what it took to install an interface card in an IBM PC or compatible system?  You remember jumpers, IRQ settings, port addresses?  Do you remember configuring drivers?  And then the various changes to the technology came along, and after a few years, we just plugged it in and it worked.  Well, mostly.  Some cards didn't live up to the standards.  Some had some configuration jumpers for different features anyway.  And some pairs of cards just wouldn't work together anyway.

Do you remember what it was like in the days of setting up printers with your favorite word processor?  Especially when it needed a custom driver?  And then, when Windows came along, we no longer had to configure every application, but now we needed to install a driver from the manufacturer for our printer when we hooked it up?

And then Windows 95 came along and got rid of all of that with Plug and Play.  Well most of it.  OK, some if it.  And it got better over time.

And cables? Remember having to build serial cables?  Or getting long parallel cables.  Now we have USB, or even WiFi and BlueTooth.

So, now, you can just plug something into your PC, and it works, mostly.  Drivers are automatically installed, downloaded or even updated over the Internet.  How long did that take?

Let's take a look why don't we:

The IBM PC was Announced in 1981
Windows 3.0 was Announced in 1990
Plug and Play came with Windows 95
USB 1.0 was announced in 1996 but didn't reach general adoption until USB 1.1 in 1998
WiFi came out as 802.11a in 1997, but it took 801.11b in 1999 before it became widely adopted, and then the WiFi Alliance was born.
BlueTooth showed up at the turn of the century.

These days, nearly 35 years later, you just plug it in, and it works. Well, mostly.  Sometimes you still need to deal with those crap consumer driver disks that the manufacturers like to give you for home use products.  And sometimes it still doesn't work.

Some of you reading this blog never had to deal with this OLD stuff, it was simply before your time. But for those folks in DC that think major technology advances happen in 3-5 year increments, I wish they'd think back to the days before the Internet, and remember how long ago that was.  It didn't happen overnight.  A baby born on the day the IBM PC was announced is barely old enough to hold office in congress, but still isn't old enough to run for President.

Yes, we've all got a long way to go for Interoperability in healthcare.  But at the same time, we also aren't in the enviable position of having only two or three vendors near monopolies on the applications and platforms to choose from (and get to adopt the standards). No, it's more like two or three thousand vendors, and the standards that I'm referencing are about 3-4 layers higher up on a stack of standards that got us where we are today plugging in a printer.

When's the last time someone just connected major infrastructure components in any business's enterprise with the expectations that some have put forth in Healthcare?  Never. Think about it. What other industries technology infrastructure has received so much attention?  Forget banking.  Anything that requires nothing more than a 2400 baud modem to communication a single transaction isn't on the same footing as healthcare.  If you have to ask why this is so, you probably aren't qualified to be making major decisions about technology infrastructure.

So, do me a favor Senators, get out of my way and let me work.  I get the need, and unlike many, I actually know what to do about it.

Assumed Ignorant

My internet was down for about an hour yesterday.  It could be readily traced back to a specific piece of hardware, and fortunately for me, I happened to have a replacement on hand that wasn't the same make and model that was causing massive internet outages all over the world.  Even when I upgrade, I hardly ever throw anything away.  I have at least three routers and a Hub sitting in my office, unused since they've been replaced with faster equipment.  So, once I knew what the problem was, I dug out my old Netgear Wireless router, reset it to factory defaults, and plugged it in to get us limping back along until Belkin could fix whatever it messed up.

The tech at Charter couldn't explain to me what was wrong, only that it was a problem with the Belkin router.  Belkin couldn't explain what was wrong, only that some software change had caused the problem.  My bet is that the server at Belkin that the routers used to ping to determine that they really had Internet access were either down, decommissioned, or renamed.

In trying to work through the problem with my Internet tech support guy, I ran into a problem that patients (especially chronic ones) have with their doctors.  I know more than your average Internet user about networking.  By the time I've called the cable guy, I've gone through all the standard Tier 1 fixes, sniffed the network if necessary, and have a pretty good idea the problem is NOT at my end. I tried to explain that to this guy, but he didn't have ANY training about how to talk to a tech savvy customer.  He only knows his scripts.  I've had doctor's like that too, who try to dumb stuff down for me because "It's too complicated."  I'd like to show them some of the code I've had to maintain in my life.

In any case, I wish there was something we could do about the attitude that customers or patients should be assumed ignorant until proven otherwise.  I think that there are some basic skills, such as being able to reset your internet box, fill up your tank, change and flush your oil and coolant, throw a breaker, or understand our health, and the healthcare system (such as it is) that should be part of everyone's basic education.  And I think the same thing goes for Physicians and technology!

When did assumed ignorant become the default, and why do we let people get away with it?

Engagement means stop treating patients like Children

We've been having a discussion about what patient engagement means over on the S4PM mailing list in the past week.  Here's a story I thought I'd share:

My wife's C-PAP machine is in need of replacement.  The fan now keeps us both awake (even with ear-plugs).  The unit we have is fairly old, and while my wife is pretty happy with that model, that unit is no longer manufactured (in fact the company that makes it has been acquired and then spun-off since).

When we originally acquired that unit, my wife researched a number of units online, and found the one she wanted, with the features she wanted.  In order to get it, she had to go through a DME supplier in my state, who had to special order it because they don't usually provide that unit (it's not pricey enough, apparently).  In case you've never experienced this, a C-PAP is a medical device that is only available through prescription (at least in my state), and even though it is very easy to set up, can only be configured by an authorized person to the setting prescribed by the healthcare provider.  Oh, and the company that we originally got it from is not in business any more.

So she called the doctor's office today because she needs the prescription information so she can get a new device.  Just to replace the device, we have to jump through all those hoops again.

My wife spent more than ten minutes explaining to the staff at our Doctor's office her problem with the current machine, and that she doesn't need another sleep study, that she's had one recently, that the settings for the device are X and Y, and that she needs the prescription to be communicated to a company that will provide a new device.


We finally managed to get someone to understand what we needed, yet it took more than 15 minutes of her HCP's staff time for her to get halfway there.  We're now waiting on a call back from the company that my HCP contacted with the prescription information, and we'll see what they have to offer, or if we need to go through that special order process.  What a royal pain this has been.

She's had sleep studies every three years, and her settings haven't changed.  She doesn't need another test.  She doesn't need a prescription other than to get the equipment she needs.  She doesn't even need advice on what kind of equipment to purchase, or how to use it.  In fact, she knows how to adjust the settings on several models of CPAP (as do I).  When you live with a piece of durable medical equipment like that, you often know more about it than some of the folks who are supposed to know how to sell and service it.

This is one of those times when I wish our healthcare system stopped treating patients like they were children.