Here is scan of Judy Faulkner’s 1979 paper called PISAR: A Time-Oriented Data Management System.  Judy’s Epic Systems went on to become a powerhouse in the Electronic Medical Record space.  It is remarkably similar to the architecture I was developing for the VA VistA’s system with George Timson and others called the File Manager.

It’s interesting to look at these systems 30 years later.  Judy’s company, Epic, has become a giant in the electronic medical record world.  VistA has gone on to power the transformation of the VA documented in Phil Longman’s Best Care Anywhere.

Rumors abound that EPIC is the lead contender for replacing AHLTA.  An alternative is the Open Vista Initiative.

I have great respect for what Judy has accomplished over the years, but at the same time, I think it would be a travesty for the government to turn to a closed, proprietary system instead of a roughly equivalent open source, publicly available one.

Isaac Newton said, “If I have seen farther than others, it is because I have stood on the shoulders of giants.”  In today’s Federal health care IT world, it’s getting hard to see anywhere, because everyone is standing on each other’s toes.  The VA’s VistA system has been in constant evolution since 1978 – and continues to thrive today.  The DoD’s uses a “break and replace” model, running one system into the ground until it breaks, only to replace it wholesale with another, more expensive system.  (It spent $250 million on TRIMIS until it threw it away to spend $1.6 billion for CHCS, which it tried to replace for $5 billion with AHLTA, which it is now throwing away to be replaced by something else.)

How will DOD pull itself out of this bureaucratic disaster area?  Will it spend billions more on a closed, proprietary system, or will it join the VA to create an evolutionary open source approach that benefits all?

Stay tuned.

P.S. I’m digging out all my old papers from the era and will be posting them in an archive Real Soon Now.

I just ran across this wonderful effort by Salman Khan to provide educational videos at the Khan Academy.  He has posted over 1200 educational videos that are seen by 100,000 people around the world.

When I went back to my fellowship at Stanford after 30 years in industry, I was amazed to find that professors were closer to vice presidents of marketing than my vision of the academic scholar.  Many seem to subscribe to the PT Barnum school of grantsmanship rather than the Thomas Jefferson’s “he who lights his candle at mine receives light without darkening me.”

It’s good to see someone being such a good ancestor, and restores my faith in the principles of the Enlightenment. As he says, “When I’m 80, I want to feel that I helped give access to a world-class education to billions of students around the world.”

It’s a shame that professors who are paid by public funds don’t do this, as well.

Keep up the good work, Salman.

This is a book written by Wilhelm Munnecke who I think is a distant relative published by Fisher Verlag, Goettingen, Germany, in the early 1950′s. I’d enjoy hearing from anyone who has any information about him or these books. I can be contacted at his last name at gmail.com

This is a book written by Wilhelm Munnecke who I think is a distant relative, published by Fisher Verlag, Goettingen, Germany, in the early 1950′s. I’d enjoy hearing from anyone who has any information about him or these books. I can be contacted at his last name at gmail.com

This is a book written by Wilhelm Munnecke who I think is a distant relative, published by Globus Verlagsgesellschaft, Hamburg, Germany in 1949. I’d enjoy hearing from anyone who has any information about him or these books. I can be contacted at his last name at gmail.com

Peter (who was described to me by a close friend as “the best programmer on the planet”) is well known for his Gettysberg Powerpoint Address, and well as having generated what might be the world’s longest palindrome.

I’m giving a talk at TEDx Del Mar June 2.  This should be a great opportunity to meet folks from the area.  For those of you not physically here, you can watch the streaming or archived version… stay tuned to the web site for more info.

I’ll probably be talking on “Sustainability isn’t enough” – and the need to shoot for a flourishing civilization, (which subsumes sustainable).

Art Caplan,  director of the Center for Bioethics at the University of Pennsylvania, posted a thoughtful letter to editor to the Denver Post saying the opposite – that individuals should only use hospital-based genetic counseling.  Here’s a summary of our differences:

1.  He says genetic counseling is a must, while I say it is an option.

2.  He says that the individual must insert their genetic information – for now and forever – into their medical record.   I say that this is an option.  I say that the individual should have the right to access their genetic results anonymously, independently of any other authorities intervening.

3.  I acknowledge the risk of poor test information, lack of ethnicity-specific results, and risks of drawing broad results from scant data.  However, the best way to mitigate these risks is openness – and public understanding.  Closing off this information to a “walled garden” accessible only to the “priests” of medicine is not going to improve the situation.

4.  This is a little like the controversy between Wikipedia and Encyclopedia Britannica.  He’s advocating the Encyclopedia Britannica approach, and I’m advocating the Wikipedia approach.  Both can coexist, but what I see happening is people trying to legally inhibit the Wikipedia approach, saying the people must use the expertise of the encyclopedia.  I say, let the reader decide.  We have wonderful open access information from Genopedia - the question is whether individuals will have the right to match their personal genetic information with what is online.  Can we do this anonymously and under our own control, or do we have to submit our information to the medical record, insurance companies, and doctors?

5.  I think that we need to be frank about the risks of turning over your genetic information to the patient’s physician and insurance company.  Exposing ones genetic information – permanently and indelibly – is not a step to be taken lightly, particularly in light of the explosive growth of the electronic medical record and break-neck efforts to integrate these records into the National Health Information Network.  I’m sorry, but based on 35 years experience in managing medical information, I don’t think that patient’s privacy and confidentiality are being fully protected.

I’m sure that there are more than a few medical associations are bouncing around the halls of Congress now, lobbying to make genetic information their turf, creating a walled garden of information that only they control.  “People aren’t able to understand this information without our interpretation, so we’ll pass laws requiring you to pay us to interpret it for you.” Just like lay people weren’t qualified to read the bible back in the time of Gutenberg.

Thanks, but I want the choice to decide whether I want to pay hospitals for their interpretation.  Maybe there is some other group that I feel more comfortable using, one that earns its reputation by doing a better job of counseling and making information available.  If my local hospital genetics program is best, so be it.  If I prefer the Mayo Online, 23 and Me, Genopedia, or my own Google Scholar searches, that’s my choice, not theirs.

And no thanks, I don’t accept your requirement that I am required to insert my genetic information in your electronic health record in order to see my own genetic information.  Let’s put in my walled garden, and I’ll invite folks in according to my choosing.

Shortly thereafter, FDA put a halt on the process, saying that Pathway hadn’t gone through the approval process; Pathway responded that it wasn’t necessary.  Walgreen’s announced that they wouldn’t be selling the kits.  (23 and Me kits are available at some local San Diego grocery stores, but the FDA doesn’t seem to mind)  I’ll let the legal eagles figure that issue out, but in the meantime, I think that there are some pretty fundamental issues at stake here.

The basic question is, who should own and have access our personal genomic information?   First and foremost, this is MY information about MY body and MY relatives.  And I demand full access to it.  If I want to consult my doctor about it, read the literature myself, or talk with others over the internet about it, this is MY decision.

There are those who say that the average “consumer” isn’t capable of understanding the information provided by genetic testing, and that access should be controlled by a physician “expert.”  First of all, I resent be called a “consumer” of my own information.  I don’t “consume” my height, weight, or blood pressure information – these are just facts about me that I need to pay attention to.   I use various technologies such as scales, rulers, or blood pressure cuffs to measure these things, and I have to be astute as to whether any particular measurement is off base or not.  I also have to interpret this information in my own context.   But this information is not the property of some “expert” intermediary that decides what I can and cannot see (and how much I will pay them to see it).

Imagine some enterprising thugs charging an “entrance fee” to use an otherwise free public park.   Economists call this Rent Seeking behavior.  There are more than a few professional medical societies who are happy to be the gateways to your own genetic information, clamoring that they should stand between you and your information – playing the role of rent-seekers.  Rather than earning their value as someone you voluntarily go to for the information, they would interpose themselves legally, forcing you to use their services whether you need it or not.  Look at our complex, expensive system for buying eyeglasses – its a little like requiring a woman to have a mammogram before buying a brassiere.  Fortunately, the experts haven’t gotten to that level of control (yet).

When Gutenberg invented the printing press, I suspect more than a number of folks looked at his converted wine press and said, “Why do we need all these books.  Hardly anyone can read them.”  His device triggered off a literature/literacy spiral that fueled the enlightenment, one of the most dramatic chapters in the history of civilization.

People were soon free to read the bible, in their own vernacular, on their own.  “How can lay people understand the bible without the theological training and assistance of the priests?” became the hot topic of the day, I’m sure.  Or for a few hundred years.

It is clear that we are just at the earliest stages of this discovery process.  We really don’t know the “nature versus nurture” issues, nor do we know the effects of environment or placebos.  Just what is encoded in the genes and how it affects us is a huge mystery to be discovered, and I’m sure will lead to many surprises along the way.  We do know that it is coming fast, however.   Sequencing the human genome was a huge billion dollar effort in the 1990′s; we can expect to see our own sequences for under $1000 in just a few years (Current genetic tests just sample pre-determined portions of the gene).

This is all a moving target – there are daily announcements of new information about discoveries in genetics.  Yes, its very early, and no, all the information is not going to be correct.  But I want direct access to it myself – and if I want some expert interpretation of it, I’ll ask.  In the meantime, keep the rent-seekers away from my genetic information.

Maybe this reflects the sad state of science education in this country, but this is bunk.

It’s like plugging a lamp into a 20 amp circuit instead of a 15 amp one.  The lamp isn’t going to blow out because the circuit has greater capacity.  The amperage used is based on the device’s demand, and as long as its less than the capacity of the circuit, its fine. The iPad’s wall charger is 10 watts, the iPhone is 5 watts, and the USB port is 2.5 watts.  The higher the wattage, the faster the charge, presuming the device can use draw what it needs.

What could do damage is if they used a different voltage… but since they all use USB, the voltage is the same.

Here’s how to think about electricity like a water hose:   Voltage is like water pressure on a hose.  It can have a lot of pressure with the valve off, but no flow.  Amperage is like the amount of water flowing.  Attaching a narrow nozzle keeps the pressure up but the amount of water restricted.  A wide open nozzle lowers the pressure but allows more water.  Wattage is a measure of the flow times the pressure.  Watt-hrs is like gallons per minute… the amount of flow over time.

Connecting a iPhone to a 10 watt charger is like connecting a sprinkler to a 2″ pipe instead of a 1/2″ pipe with the same water pressure.  If the sprinkler’s demand can be handled with the 1/2″ pipe, then it doesn’t matter if you connect it to a 2″ pipe.  If the 2″ pipe had more pressure (the equivalent of voltage), then things would change.  (but the iPhone and iPad use the same voltage).

So, its an urban myth…