The Black Liszt

Medicine as a Business: Medical Testing 4: Getting the Results 2

I've done everything I can to use the Mount Sinai patient access portal to access my test results, without result. (See here for the start of this saga, and here for the previous post.)

Now it's time for desperate measures. I finally take the radical step of picking up the phone and calling for help. Surely the results are there!

Here's what happened.

• I called.
• I was put on hold.
• I explained the situation.
• I was put on hold while the CSR checked something out.
• More questions. More holding. Rinse and repeat several times.
• Hold while I check with my supervisor.
• Rinse and repeat several times.
• Final result: we can't help you, call your doctor and have them help.
• But what can they do that you, the specialist can't??
• They have a number they can call to get help.
  

More than half an hour on the phone, and I get to ask my doctor to call someone who won't be able to help either. And I'm sure my doctor would jump at the chance to fix this problem, since he looooooves the EMR so much!!

Desperate and out of options, I call the doctor's office.

• I got transferred to a 5 minute wait before getting a dial tone.
• I got transferred to voice mail.
• I got transferred to nowhere again.
• Again.

Finally, someone picked up whose voice I recognized -- the office receptionist. I explain the problem, and he tells me that the Mount Sinai Radiation Center uses a different EMR than the rest of Mount Sinai!! Apparently one that doesn't send patient data to MyChart.

He promises to get me into the Radiation Center EMR patient portal AND send me the results. "What's your fax number?" he asks. "Umm, can you send it by email?" Pause... "Sure, I can figure out how to do that. What's your email?" I gave him the information, and five minutes later, I got an email with a PDF document attached. The document had the test results and instructions on how to get into the patient portal.Thank you!

Problem solved! I read the report, and the news was good. The thing that had been growing had stopped growing. But self-sacrificing guy that I am, I didn't stop there. What would have happened had I not persisted in my calling, and connected with a helpful and knowledgeable receptionist? After all, the report was supposed to be in the patient portal.

So I persisted. I decided to get into this special patient portal and finally see that the test results were actually posted there and available to me.

The Radiation-only EMR and patient portal

Leaving out all the details, I followed the procedure and after only a moderately odious amount of work (I had an access code!), I got into the portal:

 

Then I went to the test results, where my report should be:

It's not there, of course. Why am I not surprised?

The test results report should have been in My Mount Sinai Chart. It was not there, as confirmed by multiple levels of customer support people. It should also have been in the Radiation Oncology patient portal. It was not there, as you can see above. Given that an insider was able to access the report quickly and send it to me, the report was certainly in both EMR's. It was in the normal Mt. Sinai EMR, because that's where the doctor who wrote the report put it. It was also in the Radiation Oncology EMR, because that's the EMR of the doctor who requested the test -- and as I learned early in the process, it was easy for people in the radiation center to put orders into the "main" system.

Here's the key point:

Neither of the two EMR's at Mount Sinai that were involved with my test put a copy of it into the relevant patient portal so that I could see it. While I managed to avoid the usual doctor's appointment to find out the results, it's not clear how much time and frustration I saved in the end. Here's what was promised:

What was the reality?

• The test results were not available in MyChart. Is Mt. Sinai management unaware of this? Are they just lying and hoping to avoid embarrassment, as they do with other important "low-level" things? See this for a juicy example, and this for context. Either choice is unacceptable.
• The customer support service, when finally available, was unable to help.
• The original doctor's office was unavailable.
• The SURPRISE! special, different EMR used by my Mount Sinai department also didn't have the report.
• I only got the report because of repeated calling and a chance encounter with a kind receptionist.

Yeah, yeah. I'm computer and math guy, and I know statistics, and I know this is just one example. But can you really imagine that what I went through was a giant, almost-never-happens, tiny blip in a uniform fabric of excellence? Right. Wanna buy a bridge? I've got one real cheap for ya...

The E-mail!

Wait! There's more! After I drafted the saga of getting my greedy hands on the MRI results, something happened.

About a week later I got an email:

WHAT!!?? This test result was supposed to be on the radiation center's portal!

What's more, the only reason I got the email telling me the result was available on the Mount Sinai patient portal was because I was previously a patient and had signed up for it. If I had come into the Radiation Center directly, without having a history at the broader hospital system, I'd still be waiting.

On July 24 I'm told that the result was posted and available to me. A result from a test that was posted to Mount Sinai's system on July 3, 3 weeks earlier. It's a good thing we've got computers -- if it took 3 weeks to make a copy of a short document from one place in the Mount Sinai computer system and store the copy in another place in a related program in the same computer system, imagine how long it would have taken to do it manually! Years, probably!

I'm writing this on July 31, 2018, so by now the result surely will be posted on the patient portal for my doctor, nearly a month after the test was taken, right? Let's check:

Nothing is available. So much for the Radiation Center's patient portal.

Now I'm curious. Is the test really there, even though on the wrong portal? Here's the results list:

Yes, it's there, top of the list.

MyChart also provides a convenient to-do list, things I'm supposed to do, and there's something on the list. Better check it out, even though no one's told me there's something for me to do; this subject is important to me, to put it mildly, and I wouldn't want anything to slip through the cracks. Here's the to-do:

Oops. The MRI that was expected to be taken on June 11, actually taken on July 2 because of my initiative, and posted to the portal on July 24 is listed as a to-do item. The EMR evidently failed to connect the work order with the fact that the work ordered was performed and the results delivered.

This sounds benign, but it's actually scary. Deeply scary. The system doesn't match orders placed with results delivered, which means that orders could hang in space, ignored, with patient-essential work undone, unless a concerned and involved patient tracks it. In my case, there was a concerned and involved, not to mention detailed-oriented patient. What about the normal case? How many important things just hang out on a to-do list, undone, until they are "cleaned up?"

There's more trouble coming. When I glanced at the results, I got the impression things were OK. But when you dive in, ... see the next and final post in this series.

Blockchain is like the Wizard of Oz

If you haven't already seen the classic movie "The Wizard of Oz," I highly recommend it. It's entertaining and instructive. Its lessons remain applicable today -- they can even teach us about the amazing Blockchain technology that is poised to transform so many industries, solve so many long-intractable problems, and that is attracting such massive attention and investment.

The Movie

Dorothy, along with her dog Toto, you may recall, is swept up from her home in Kansas by a tornado, and eventually comes to earth in the land of Oz.(Credit.)

It's quite a place, populated by witches and munchkins, among others. The good witch of the North, Glinda, tells Dorothy that the wonderful wizard of Oz may be able to help her get home, so she sets out on the yellow brick road to the Emerald City, where he presides. Along the way she meets the Scarecrow who needs a brain, the Tin Woodman who desires a heart and the Cowardly Lion who needs courage. The four of them join forces to ask the wonderful Wizard's help.

The Wizard promises to help them all -- but only if they bring him the broomstick of the Wicked Witch of the West. So off they go and confront the Witch.

Eventually they defeat the Witch and bring her Broomstick back to the Wizard's palace. They walk down the intimidating hall 

Until they reach the Wizard's throne.

Gathering up their courage, they present the broomstick to the terrifying Wizard...

and ask that he fulfill his promise to them. 

The Wizard stalls. Meanwhile, Toto the dog, noticing something, pulls aside a curtain and reveals a man talking into a microphone. It's the real Wizard: the Great and Awful Wizard of Oz is just an ordinary man!

Dorothy confronts him. He admits he's just an ordinary man, and a humbug at that.  

He gives the Scarecrow a diploma, the Lion a medal and the Tin Man a heart-shaped ticking watch, helping them see that the attributes they sought were already within them. He offers to take Dorothy and Toto home in his hot air balloon. Then there's a mishap, and he leaves without her!

The story ends happily, because the good witch intervenes, and shows Dorothy how to return home under her own power, repeating three times "There's no place like home."

Blockchain

What can the Wizard of Oz possibly have to do with the marvelous emerging technology of Blockchain, which is set fo transform so many domains that are badly in need of help?

The movie has amazing lessons for us. I can't spell them all out in a single blog post. Here's a start:

Dorothy is stranded in a strange place and doesn't know how to get home. People who run financial systems have problems like lengthy settlement times that aren't getting solved.

Dorothy meets other people in the strange place who also have serious problems. People in other domains, like healthcare, have long-standing problems like EMR interchange that aren't getting solved.

The Good Witch tells Dorothy that the Wizard of Oz can help her get home. Authoritative people tell us that Blockchain can solve those problems.

Dorothy travels a long way to the Emerald City with her friends to ask the Wizard's help. After lots of work, people commit to the money and effort of a Blockchain trial.

The Wizard tells Dorothy that she has to bring the Wicked Witch's broomstick before he'll help them. Blockchain experts explain all the work we have to go through to get a test that has a reasonable chance of success.

Dorothy and her friends go through battles to get the broomstick, finally killing the Wicked Witch to get it. After lots of money and time and experts, a trial is finally underway.

Dorothy and her friends approach the Wizard and ask him to do what he promised. The sponsors of the blockchain project insist on results.

Toto pulls back the curtain, and reveals that, far from having amazing powers, the great and awful Wizard is just an ordinary man, and a humbug at that. The sponsors finally see that Blockchain solves no problems and is worse in every way than a normal DBMS.

The Wizard makes nice words that make her friends feel better, and after promising to solve Dorothy's problem, abandons her. Blockchain can't do much of anything, outside the context of Bitcoin, and when it appears to "work," the results are awful.

Glinda the Witch tells Dorothy to close her eyes, tap her heels and say the words three times. She wakes up in her bed in Kansas. Her relatives think she's had a dream. The Blockchain executives quietly let the project fade away. They do their best to calm their minds, refuse to admit defeat, and go back to their normal lives.

Conclusion

The world of Blockchain is indeed like the Wizard of Oz. While you're "in" the movie, you're convinced it's real, and so is everyone around you. When you wake up, you're back in normal life and understandably reluctant to think the amazing experiences you've had were "just a dream." But everyone else knows that's all it was. A dream that seemed good at the time, but turned out to be, yes, a bad dream. See this for a fact-based dissection of the bad dream.

 

Social Media Has a Long History

It seems like the whole world is in an uproar about social media, with frequent revelations of awfulness and malfeasance. The uproar is about social media such as Facebook, Twitter and the rest. The trouble is these issues have existed in one form or another in social media going back ... hundreds of years. What we are seeing is ignorance of the present combined with ignorance of the past. In other words, business as usual.

The Core Drivers of Social Media

Most people care about their place in society -- their status. They care about how they're perceived, who knows who they are and how others relate to them. While this drive seems to come to a kind of perverse peak in middle and high school, it persists for most peoples' lives.

Intimately related to caring what others think is the drive to express what you think and what you've done. While this is related to influencing others' thoughts, it seems to be a kind of innate drive as well.

In short, you want to tell people what you've done, what you think, and you want to hear about other people, particularly those you somehow are involved with or even just similar to in some way.

Closely related to this are the core concepts of status and fashion. It's a basic urge to want to see your status reflected publicly if it's high, and many people have strong interest in what high-status people do and how they do it. Particularly as fashions of various kinds wax and wane, from clothing to activity to speech, people who want to increase their status have an intense interest in learning what the new things are.

Key Characteristics of Social Media

What makes something Social media vs. some random other kind of media? It's pretty simple: social media mostly consists of media (words and pictures) that is about and either written/created by the person or sourced from that person. It's about what a person says, thinks or does.

Now let's get to the other key characteristic: money. Who pays for social media? After all, it costs quite a bit to produce it, and that money has to come from somewhere. Historically, the people who consume the media pay a little, while ... get ready ... advertisers pay a lot. Today, the incremental cost of delivering social media to the person who consumes it is so little that no one bothers to charge for it -- the whole cost is borne by advertisers.

Social media is an amazing phenomenon, deeply rooted in human drives and emotions. People produce the content for it for free -- they are glad to have things about themselves distributed at little effort of their own to those they may like to know about it. And they read about themselves and people to whom they are socially connected with, paying to do so if necessary. They can't help but knowing that the ads that are intermixed with the "content" are going a long way (in the electronic world, all the way) to paying for their reading pleasure, but it rarely bothers them. They also know that ads are targeted to particular groups of readers. It makes common sense, after all. No big deal -- if I were an advertiser, of course I'd want to show my ads to people who are likely to buy what I'm selling!

Earlier versions of Social Media

People like to imagine that social media are strictly electronics-age things. Mark Zuckerberg invented it, didn't he? No, sorry! Social media have been around for a looooong time. I could go all the way to ancient Sumer and Egypt, but I think the point will be clear enough with more recent examples.

Here is a notice in the Pittston Pa Gazette from 1928 about a function attended by my grandmother, Agnes Black:

Here is an ad that helped pay for that information to be printed:

More recently, here is a notice in the same paper from 1955 about a visit made by my parents:

Here is one of the ads that helped pay for the notice.

The notice was actually fake news! My parents visited with their two children, David Bruce Black and Douglas John Black -- not David and Bruce. The advertisers don't care a whit -- they just want the eyeballs to persuade them to buy some hot new technology:

I could give examples from many other places and centuries. Things have evolved, but since the principles are rooted in human in human nature, not as much has changed in principle as you might think.

Conclusion

Everything is about people. A great deal about people is relationships and status. The experiences we had in middle school and high school didn't disappear into nothingness. They just evolved as each of us entered new groups of people, each with its own pecking order and rules for engagement. One of the most ironic things about modern social media is that certain groups of people are really upset about what gets published, and want to make sure that only the "truth" is published. They, of course, want to be in charge of defining what "truth" is. Sorry, guys, in the world of social relations and much else, "truth" is nothing but a pretty veneer on top of raw power. Yes, your grace, your honor. Why should it be different now that we're staring into little screens and swiping while we walk?

 

Medicine as a Business: Medical Testing 3: Getting the Results

If you went to the time and trouble of a medical diagnostic procedure, chances are ... you want to know the results. ASAP!

It's a perfectly reasonable desire. In most areas of life, getting the results of something you paid for is pretty easy. If the results are information, most organizations just send it to you -- by snail mail, email, text or whatever you've arranged. For example, think about the crucial tests you take that have so much influence on your schooling and career, things like the SAT, MCATS, LSAT, and professional certification tests. You take the test and they send you the results in a standard way.

Not so in the wonderful world of medicine! In that world, you go to considerable trouble to arrange the test, and once it's been taken ...the fun of getting the results begins!

Getting medical test results

The usual pattern of getting the results from a medical test appears to be based on the assumption that patients are both stupid and illiterate. No way can you just send the results! The patient has to make an appointment with highly qualified medical person, who then patiently explains to the patient what the results were and what they mean. Plus, there's an office visit to be paid for.

We are told, however, that there's a revolution going on with medical record transparency. In this wonderful new world, patients can access their medical records themselves!! The major EMR vendors now support a "patient portal" for making such results available online, and major hospital systems brag about it.

Hmmm, I wonder if that's how I could get my results. Oh, I remember now, Mt. Sinai has a patient portal! I'm even signed up for it! Oh, good, this should be easy...

Getting my results from the Patient Portal

The test was ordered at Mt. Sinai. It was performed at Mt. Sinai. I have a MyChart patient portal account at Mt. Sinai. This should be a piece of cake. I pull up the main screen:

Isn't it nice? The EMR software provider, Epic, has a patient portal module called MyChart, which Mt.Sinai has cleverly called My Mount Sinai Chart. All I have to do is login, and I'll surely be able to access my recent test result, just like they say!

I login. I'll spare you the details, and keep it short: the MRI report is not there.

How is this possible? What happened to "no more waiting for a phone call or letter -- view your results..."??

I have just one thought. Maybe the fact that my original doctor left Mt Sinai and that I signed up for the MRI with a new doctor at Mount Sinai confused the system. Maybe I was signed up under a different identity!?

I poke around on MyChart a bit more. In reality, I visited the Mt. Sinai radiation center 30 times over about a six week period, and had separate consults with the doctor in charge of my radiation at least four times. NONE of these visits are listed. In fact, the last visit recorded was from 2016!

MyChart is still a wonderful program, probably ready, willing and able to show me all my stuff, but probably human error resulted in me being entered as a new person. All I have to do is create a new account, and I'll find all my records.

Signing up for the patient portal account

I'll dive right in. Given how important this is, the portal is probably written to make this effective and efficient. Here goes! I click on set up new account and get to here:

What's this activation code business? I look around and find this:

Odd. "Sign up online?" I thought that's what I was already doing! At least there's something relevant for me to click. I click it and get this:

That's more stuff to enter than I've seen in a while. There's a lot that could be said about this form and how it works, but I'll just point out one unique aspect of it:

When was the last time you had to enter your county? Even better, even if you've already entered the state, you get a list of all the counties in the whole USA!

Once you get to this point in the form, you realize that the creative people who built this software have actually created an obstacle course, a long and challenging one, hoping that most people will drop out from exhaustion long before completing it. And we haven't gotten to the really good stuff yet.

Establishing identity for the patient portal

Apparently it's really, really, REALLY important to make absolutely SURE that only the person themselves signs up for chart access. After filling out the form you see above, I got my identity hammered at:

Next, where have I worked:

A home equity loan:

My bank:

My former home:
Finally, after accurately answered all of these questions, and risking totally awful 100% identity theft if their system is compromised, I get this:

 

At this point, a sensible person would have given up and tried to make an appointment with a doctor, so the doctor can access the results document and essentially read it to me. But convinced as I am of my ability to read documents (egotist that I am), I decided to plunge ahead and try another path to getting the document. The next post continues the story.

The Hierarchy of Software Status

You might think that the hierarchy of status in software closely tracks the hierarchy of software skills, which I explained here. Hah! It is true that there is a small but important subset of people whose internal sense of status tracks the skills hierarchy reasonably well. But not for most programmers. The reason is simple: non-programmers' assessment of software status is unrelated to skill! It's a whole different hierarchy that has nothing to do with the ability to conceive and write good code that works!

Here is an earlier attempt to explain this issue.

This is NOT just an "academic" subject, BTW. It is absolutely crucial to getting good software done. See this for another angle at addressing the same subject.

Status

Status is part of human existence. There has always been a status hierarchy. Not long ago, we had lords and peasants in which the status differences were overt:

Status itself has barely changed since those days, though the clothing and other means of expressing it has changed a great deal.

Status is expressed in clothing, language, money, power relations, human interactions and in much of what we do. It would be shocking if generic human status relations did not apply to software. What's interesting is the translations that are made, which track medieval lord-and-peasant relationships quite well.

Status in Software

The easiest way to explain how status works in software is to look at how "close" you are (along multiple dimensions) to real people using code today. The closer you are to actual code and/or people using code, the lower your status; the farther away, the higher your status.

• One dimension is time. The highest status of all is enjoyed by people who think great thoughts about how some software might be built by some undefined group at some undefined future.
  
• One dimension is management layer. In any group, the "lowest" person in terms of management levels has the lowest status, the manager of the worker's manager has twice-higher status.
• One dimension is closeness to a real user. Anyone working in any way on code that isn't yet used by anyone has greater status than anyone working on code that is in actual use.
• One dimension is tied to the flow of interactions with users. If you work in any way on the flow of code or changes to code that is on its way to users (i.e., to production), you have higher status than anyone working in any way on the flow of information and communications that flow from users to the supplier or deliverer of the software. In other words, building software is higher status than customer service.
• One dimension is trendiness. It's really important to identify yourself with tech trends that are exploding in fashionable talk.
  • If you're too early, you lose status. When someone hears you babble on about something, if they check it out on conferences, publications and the web and it's obscure, you seriously lose status.
    
  • If you're too late, you lose status -- you're pegged as someone who's part of the crowd. Better late than never, of course. You also lose status if you keep bringing up something that's starting to fade away.
  • Maximum status is early-peak attention.
  • You can't actually know anything or do anything in the fashionable area and have any chance of maintaining status. You've got to direct, hire, establish, prioritize or strategize. Those all keep your hands safely clean and enhance status.
• A dimension that becomes crucially important during the hiring process, and which often persists long after the hiring date, is the visibility and perceived success of the person's prior company. The more visible and successful, the higher the status.
  • No one knows whether the person had positive impact on the company's success or the opposite. The person from Google has a halo, regardless of what they did.
    
  • This is a subject I treat in considerable detail in the Software People book, along with other important hiring considerations.

Naturally, there are nuances.

• For the people who deal with the flow of data back from users:
  • There are people who respond to customer complaints and problems. Super-low status.
    • Some of those customer issues are real bugs in the software! The very lowest status goes to the people whose job is to patiently educate the stupid users whose inability to do the simplest things with such a wonderful application is obvious to everyone except themselves. The people who get called in to see if there really might be a bug have higher status.
      
    • The people who fix such bugs have even higher status, but still remarkably low.
  • There are people who analyze conversion rates and details of customer use of the application.
    • All these have higher status than anyone involved with customer complaints or bugs.
      
    • If they deal with things like conversion rates, that's related to high-status strategy and marketing and therefore higher status than anyone whose job is to tweak the application to make it better for users.

There's another important aspect of status. I suppose I could jam this into the "dimensions" list, but I think it's simpler to say this other important thing about status this way: the more code you write, the lower your status. Writing no code is, with some important exceptions and subject to the general dimensions above, higher status than writing any amount of code.

Yes, writing code requires highly specialized knowledge. But so do lots of other low-status things, like repairing garage door openers or installing lawn sprinkler systems. The people who manage the repair people are, of course, higher status than the people who get dirty or use their muscles doing physical work. Similarly, the people who metaphorically dirty their minds while doing demanding, hard mental work are lower status than those who direct them in any way.

Another way of thinking about this is asking, what's your main focus? To the extent that it's a body of code, your status is lower. To the extent that it's people, your status is higher, with some exceptions, see customer service above.

Like anything else, there are exceptions. I have met highly productive coders who are older and well-regarded. But they're rare, and usually they're tucked away in a corner if they're tolerated at all.

Conclusion

The way status is perceived in software is perverse, and accounts for a great deal of the dysfunction we see in the software world. It is sad. Even sadder is that, with all the fashion trends that sweep through the tech world, none of them addresses this issue. People with high software skills often perceive this and shake their heads, knowing there is nothing they can do about it.

There are, of course, tiny groups of people where status is conferred as it should be: to the people who can conceive and then build their way to victory, rapidly and effectively. It's from those warriors of the abstract world that I learned the principles I discuss in my various books related to wartime software. There is more information and context on this and related subjects in my book on Software People.