About to have a call with the National Health Service

I am about to have a call with a group of people who work with the UK National Health Service.
I know for a fact that the people on the call are doing serious, thoughtful work on behalf of their government.

In contrast, my government just started paying the electricity bill again.

It is fairly hard to describe accurately how I feel about going into a call like this. Happily I have Reddit/Imgur to help!!

Two important dates

There are two events coming up soon that you do not want to miss.

The first is not this weekend but next: The Houston Health 2.0 codeathon is happening (March 23-24 at Platform in Rice Village)

The second is Health::Refactored from the Health 2.0 conference series. That happens on May 13-14 in Mountain View, CA.

I will be acting as mentor at both events. We are specifically looking for e-patient mentors, so if you are interested in this role, please let me know.

Also, I need to start promoting these different conferences and code-a-thons that are friendly to the “Hacking Healthcare” approach… what is the best way to promote and maintain different events on the web? Is there some kind of automatic event-to-email-to-RSS-I-don’t-have-to-think-about-it tool that is popular for tracking a series of events?

Go to these two conferences. They will be awesome!

-FT

 

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