OCR refuses FOIA request

Joe Conn, one of the best Health IT reporters I know, has been denied FOIA access to breach data reported to the Office of Civil Rights.

Honoring FOIA requests is a critical part of how the people ensure that the government is not abusing its power. That might sound paranoid, but blanket rejections like this are deeply problematic and are often evidence of deeper issues.

Given that this is directly related to the documentation of abuses of patient privacy, I should expect that Dr. Peel will want to get involved. Frankly, it is moments like this that I am thankful that someone like Dr. Peel is as tireless and relentless as she typically is.

When a FOIA request is refused in this manner, it will usually take a judges involvement to open things back up.

-FT

Steve Jobs is dead. Long live Steve Jobs.

Today, Steve Jobs died.

This blog post will be only one among thousands of posts devoted to his drive and his genius. Thousands will celebrate a technical legacy that almost no technologist can hope to replicate. The original Macintosh, those early films from Pixar, the iphone… hell I am typing this on a Macbook Pro (dual booting Fedora… but still…).

I think this might as well be a good time to mention why it is that I do what I do. I lost my mother to ovarian cancer almost 10 years ago exactly.

I work on Health IT rather than more lucrative endeavors for one simple reason.

I will never cure cancer.

I am not even sure that “cancer” is curable. Cancer is too deeply related to the way our cells normally function in order to simply be “cured”. There is a good chance that all we will ever get is “really good treatments” for cancer. But it hardly matters for me. I will not be the guy who finds the cure or the “really good treatment”. I am a computer scientist, its just not what I do.

But my mother did not just die from cancer. She also died because of a medical error. A doctor had enough information to diagnose my mother correctly many months before we discovered that she had ovarian cancer. But doctor missed the signs. That is pretty common with ovarian cancer, it is less common than breast cancer, but more often fatal because it is harder to detect. Still, the signs where there. The doctor thought it was the flu.

Once cancer has gone too far, fighting is an uphill battle that many, including Steve Jobs, lose in the end. My mother died at 52. Jobs died at 56.

Is cancer an uphill battle or a downhill battle? Early detection is everything. And early detection is an information problem. It is a diagnosis problem.

It is a computer science problem.

Reading about Steve hits me pretty hard. He was one of us, a geek. Not just a geek, but a visionary among geeks. I do not square with the Jobs ideology… but I have to admit, he did some amazing things.

Steve Jobs said that he wanted to put a “ding in the universe”. And he did.

But the ding that I want to make in the universe is so much greater. The ding that I want to make is to make it much much rarer for us to lose people like this. Can you imagine what Steve Jobs could have accomplished if he had lived another 10 years? 20?

I will never be as famous as Steve Jobs and I will never be able to make as much of a difference as he did. If any progress at all is made in health IT it will be due to the cooperative work of tens of thousands of geeks with my skill set. But I am pretty hopeful that the area I am working in can really make a difference in the world. I hope that we might be able to make a few more critical diagnosis in that critical window where we might actually save some lives.

Tonight I will toast Steve Jobs, and to my mother. This is a good a time as any to reveal my addition to the latest painting by Regina Holliday. I did not tell her this, but I watched her paint this on the 10 year anniversary of my mothers death. I did not get to be with my family at the graveside that day, but Regina decided that others could add to her painting… so I added this.

dear mom, if i can change the code, I can change the world.

That pretty much sums it up.

-FT

WorldVista Meaningful Use Certified

Not sure why this was not formally annouced, but I was just doing some last minute fact-checking on my new health IT book, and I discovered that WorldVista EHR is a meaningful use certified product.

This is quite an accomplishment, and I am somewhat surprised that WorldVistA has not had an announcement about this. This is really important news and have broad implications. WorldVistA, unlike ClearHealth and Medsphere, is a non-profit organization.

Medsphere and ClearHealth provide only “pro” customers with the benifit of certification. How will WorldVistA handle this?

It is not clear to me if this could be the first completely available (sans proprietary ontologies of course) meaningful use certified Open Source EHR that you do not have to pay for support for. To make an analogy its like the difference between Fedora getting a certification vs RedHat Enterprise Linux getting a certification. Both are Open Source, but the latter is expensive

The other Open Source options as I understand them:

Tolven is partially certified as is OpenEMR.

ClearHealth was the first to be fully certified, and Medsphere also has a fully certified product.

Meaningful Use book

The first chapters of Getting to Meaningful Use are available online for public comment.

I am often surprised to meet people at conferences who say “I read your blog”. I mean, I know you read… because I have server logs to prove it…. but actually meeting someone kind of blows my mind.

So if you read my blog, and you enjoy it, please take a moment to read the first chapters of my book and give me some feedback on it.

I would especially like feedback on the Introduction. I was the primary author on that part (although that chapter especially had help from both co-author David Uhlman and my editor Andy Oram). Getting that chapter right is really important to me, because it is really sets the tone for the whole book. It details how Health IT is really different from normal IT.

If you are a regular reader, please, take a look.

-FT

Announcing Open Glaze

Hi,

I am here at the first ever Quantified Self Conference and I am announcing a new Open Source Game Layer project called Open Glaze.

Here are the basics of my Game Layer philosophy that are influencing my work on Open Glaze.

  • This is not one monolithic system. Its a Unix software development philosophy. It is a series of tools that do one thing really really well, and you can chain them together to do interesting stuff.
  • This is not intended to be a platform play. Platforms are intended to be profit sources which is why they are so popular in start-ups, but I am not convinced that this model works in this area.
  • I suppose you could make a platform play out of Open Glaze if that is what interested you.
  • I am substantially non-committal on the Open Glaze software sub-projects. I will probably be open sourcing almost everything (unless there is a very good reason not to) and if the projects are not popular or useful, and cannot attract other maintainers, I intended to abandon them.
  • Everything here, is part of the huge experiment that I call Programmable Self experiments that do not work will be taken out back and shot.

What -is- Open Glaze? It is a series of tools:

  • TokenGeo. This is a website that lets you create reverse geo tokens. Take a look at the reverse geo caching box, for a reference. The basic workflow is, create token stickers that use QR code-based URLs that  to lead you to a place using your GPS enabled smart phone, and then, once you get to that spot, open up some new spot on the Internet (open a secret URL).
  • 1 to 11. (because this one… goes to eleven) is a place to create your own Quantting web forms, that log the results to Twitter in the Graffiter syntax.
  • LinkedLast is a method for using your Twitter feed as a controller for the destination of a QR code.
  • StatusPresent is a method for using your Twitter feed as presentation software, and to crowd source tweets for Q/A sessions. (not sure how this relates to healthcare frankly… but it was an experiment)
  • WalkOrGive is a website that uses the fitbit API and the Twitter API to create “giving performance gambling”. If you meet your step goals for the week, walkorgive will tweet your success to your stream and ask your followers to make donations to your favorite charity (using a PayPal link) in your honor.
  • Of course, more to come

RPMS is certified

RPMS, the VistA cousin run by the Indian Health Services has received ambulatory and inpatient meaningful use certification.

RPMS is substantially available under FOIA, (there are some proprietary components required to emulate the certified stack, I believe) and is the first Open Source stack that I know of to be certified as both inpatient and ambulatory.

More as it develops.

-FT

Correcting Information Asymmetry for patients

Consumer reports is invaluable tool for the purchase of almost anything.

Anytime I am considering a major purchase like a car, or perhaps expensive electronics, I always by temporary access to consumerreports.org. While the Consumer Reports magazine can be interesting to browse, the website is even more valuable. You can access any recent product review done for the magazine in an instant.

The problem that consumer reports addresses is “information asymmetry“.

Consider going to the car lot to buy a car and then comparing two similar car models. Both of the new cars cost about the same amount of money. Both of the cars have the same essential features. Which brand of car should I buy?

The problem here is that there is an asymmetry of information. The car sales man knows much more about the performance of these brands of cars than I do. So there is a danger that he will recommend the worse of the two cars, which he will have over-priced. If I trust the car salesman, I might be doing what is best for him, not best for me. Even if the salesman is honest, he might be making his recommendation based on what the needs of the average car buyer. To the degree that I am different from the average car buyer, my needs might be different.

Consumer reports helps to reduce this asymmetry. I can learn about how the cars perform from an objective source. I might end up taking the car salesman’s recommendation… I might not. My decision will be based on -my priorities- which can be very divergent from both a typical customers and from the salesman’s interests.

This kind of information asymmetry is even more pronounced in healthcare. I could learn what a car salesman knows about cars in about a month of diligent study. But to understand what a doctor does I would have to study for years. If I am trying to make a decision like “Should I have this surgery” I am at the mercy of the doctors much-greater information position. The Surgeon might be recommending surgery because that would generate income. He also might be recommending surgery because he is assuming that my priorities are the same as the “typical patient”.

Rectifying this information deficient for as a patient is much more difficult, because the resources available to patients are often problematic.

The information on WebMD is probably accurate as far as it goes, but it is dumbed-down. You can always spot information that might not go deep enough on the web, because it always ends with “ask your doctor about…”. That is the least helpful thing to say here. It means “This is actually a much more complicated issue, but we are not going to give you any more information, instead go ask the car salesman (the doctor)!”. It is the doctor that I am trying to evaluate here!

Wikipedia has much more accurate information that goes much deeper, but its articles are of sporadic quality (usually very high, sometimes very low… which one are you reading now?) and it may not be updated with the latest information on its more esoteric articles. It was not never intended to be relied upon for medical information that changes very very rapidly.

My boss and collaborator at the Cautious Patient Foundation Dr. Cari Oliver has just written a detailed blog post where she details how patients can use at service called uptodate.com to get around this problem. This service is intended for doctors, but they have recently allowed temporary access rates so that patients can access a topic or two and not pay the expensive yearly access fee. Of course, this service is aimed at doctors. It might be a little over your head. But it is better to have access to accurate, recent information about the risks and benefits of different procedures, from a disinterested third party authority that is too complex than not to have it all!

This type of recommendation excites me as a technologist passionate about social change! This is a classic example of using information to make patients more powerful!!

-FT

Two other Open Source EHRs Meaningful Use certified (partially)

I just found out that at least two other Open Source projects have been meaningful use certified.

OpenEMR has been partially certified.

Medspheres OpenVistA CareVue has been certified.

I hope to get more information about exactly what the partial certification means and what the meaningful use strategies of these organizations mean, but this means that the ClearHealth is no longer alone in certification. (Although from what I can tell, ClearHealth remains the only fully certified Open Source EHR)

I will write more when I know more…

Glen Tullman presents the Chewbacca defense

I have been meaning to write about this for a while.

Glen Tullman and I have pretty different opinions about Health IT. Glen is the CEO of Allscripts, which is the largest proprietary EHR vendor in the country. When ONC called for testimony for the definition of meaningful use, Glen and I sat on the same panel. I testified after him, and I painted a much different picture of the state of Health IT than he did. The summary of his testimony: “The future of EHRs is already here, we are doing meaningful use today”. The summary of my testimony: “There is a market failure in Health IT, no other industry needed to be paid to computerize”. He holds his own software company out as an example of the “right way” where as I generally hold VA VistA, which was developed in a Open Source collaborative fashion as the way forward.

Of course we are both financially biased in this regard. I am an upper-middle income software developer, and Glen got paid $4,072,270 last year. Given the kind of money I make on this Open Source stuff you should probably take everything I say with a grain of salt, and take everything he says with about 45 grains of salt… you know… based on the relative bias involved…

But Glen Tullman got an opportunity to testify again (without me this time), regarding VA VistA. (text, video)

In this testimony, I want to focus on one specific statement, that is particularly galling to me.

While the private sector has been moving forward in light of these incentives, the Government has been investing in their own proprietary systems for many years.  Billions of dollars have been spent to build and implement the VistA/CPRS system within the Veteran Health Administration and the AHLTA system within the Military Health System.

So the VistA/CPRS is “proprietary”, while Glens own software is “private sector”. Wow. The Chewbacca defense at its best.

VistA/CPRS can be run for any purpose, the sourcecode is available for anyone to download without cost, you can redistribute those copies of VistA/CPRS without cost, and you can also redistribute modified versions of the software. That means VistA/CPRS meets the definition of freedom-respecting software, which is the soul of Open Source. Moreover, it was and is developed in a collaborative fashion that is at the heart of every successful Open Source project. If you want to know more, you should read What is VistA Really page that I edit for WorldVistA.

Then, Glen takes credit for accomplishments of Open Source technology:

For example, in Hartford, Connecticut, we have been partners in a project for almost two years that has not only led to widespread health IT adoption but successful implementation of open source health information exchange technologies.

What Glen meant by this is that there are some Allscripts node on an Open Source HIE created by MOSS, Misys Open Source Solutions. In short, Open Source -was- responsible for the exchange, and this had very very little to do with Allscripts software.

He goes on to say:

the fact remains that VistA’s basic platform, which relies on the 25-year old technology called Mumps, cannot support the open, flexible approach needed by those providing care to our nation’s wounded servicemen and women. Rather, the demands of today’s military and veteran healthcare environment necessitate the use of technologies – such as those based on Microsoft’s architecture – that can support an open, shared approach that will not just be desirable, but a fundamental requirement in the near future.

It should be noted that -every- instance of VA VistA inside the VA is capable of communicating with every other instance of VistA inside the VA. The VA was the first and probably still the only large scale organization to achieve this kind of internal data fluidity, which has been happening for more than a decade. Interestingly, the other “large” vendor in Health IT is Epic, a proprietary EHR company that relies heavily on MUMPS. I can think of nothing that Allscripts software can do that either Epic, or VistA is not capable of. Holding out Microsoft technology as a source for peer-to-peer leadership is also pretty ironic, but whatever…

Glen is pretty used to speaking out of both sides of his mouth regarding Open Source. And this testimony is far from the only instance. First there was this article in Forbes, which originally claimed that Allscripts had an Open Source platform, but was then quickly redacted to its current “clearer” status. This was not before it was completely flamed..

most recently, Glen was interviewed in the January 2011 Edition (Vol. 19, No. 1) of HealthData Management Magazine

And Tullman has spent those years (since 1997) being a relentless advocate of the use of open source architecture for health I.T. software and pushed his company to develop tool sets to connect its EHR software with virtually any device or software on the market.

This is was, of course, published in time with the edition of the magazine that would be available during the 2011 HIMSS conference.

This is a very disturbing case of a proprietary EHR CEO being completely intellectually dishonest regarding Open Source. I am on speaking terms with several of the top CEOs of proprietary EHR systems. People like Jonathan Bush of Athenahealth and David Winn (formerly CEO of) eMDs. I have advocated Open Source to these figures on a regular basis. But the remain proprietary companies because they believe that they will make more money as proprietary companies. I believe that Open Source has value that should be more important than profit, and have a friendly disagreement about this with most industry CEO’s. They think my ideas are intriguing and have potential, but see no reason to “bet the farm” on Open Source.

But they also -never- hold themselves out as the “Open” or “Open Source” option. Nor do they malign technologies merely because they are other than those chosen by their own developers. Glen Tullman regularly does both of these. Hell, he did in testimony to Congress.

Look I know that not everyone agrees that Open Source is the way to go, this is not what I am arguing here. I am arguing that we need to have honest and sincere disagreements about licensing and technology issues in Health IT rather than listening to Glen Tullman and his Chewbacca defense.