Tom Munnecke’s Eclectica

I’ve just switched my health insurance back to Kaiser Permanente Southern California.   Our children were born in Kaiser hospitals, and we were always very happy with the services they provided.   We moved to another system for about 15 years, but due to a complicated string of circumstances, our group plan administration forced us to switch back to Kaiser, which we wanted to do anyway.

I have been hearing very good things about Kaiser – from docs who like the working conditions, predictable salary, and ability to focus on health care, not business.  We have also heard very good things from current members.  So, we are excited to be back as Kaiser members, both as patients, but also to see more of their model from a patient perspective, chatting up fellow members in the waiting room, and asking employees what they think of their computer system, and the Kaiser model.

They use the Epic Systems Electronic Health Record, which is a first cousin to the VA VistA system which has been my briar patch for the past three decades.  The CEO of Epic, Judith Faulkner, was active at the MUMPS Users’ Group meetings while still a graduate student.  She formed Epic, and I went off to join the VA to do what is now VistA.  Here is an paper from 1979 describing some of her ideas.

I chose a physician from a nearby clinic, and got my initial appointment with him within about 10 days.  I was very impressed with how efficient things were. I was very confident that he was on my side, and not calculating his billing codes per diagnosis, nor pushing drug samples that he got from pharma reps.  (I recall one appointment I had with a doc at Scripps Clinic where the posted a sign saying that, due to the fact that the doc was just returning from vacation, he would not be seeing pharma reps.  A woman dragging a cart full of drugs wearing stiletto heels, a  blouse that wasn’t fully buttoned, and very tight skirt walked right in past the waiting patients. )

I was referred me to 4 other services at Kaiser; I got appointments with them that afternoon.  One class that was scheduled a month later, but I got two specialty services 2 and 9 days later.  He referred me to the travel clinic for an upcoming trip to Costa Rica, and they called me back within two days with full information about vaccination, advisories about malaria areas, etc.

I went in for my lab tests, waited only 10 minutes in the waiting room, and started getting my results online before I got home.  The pharmacy automated kiosk was closed, so there was quite a line at the pharmacy, but other than that, I didn’t have to wait for any of my appointments past the scheduled time.

This was all delightfully efficient.  Everyone I met was cheerful and a pleasure to deal with.  So far, an A+ for organizational efficiency.

I liked the online access to my medical information.  It is a bit hard to navigate, and it is still coming from a design ethic of “automating the organization chart” rather than reflecting what a patient wants to see.  There’s no “what’s new” feature; I have to drill down each branch of the departmental tabs, then scan the lists for information of interest.  It’s nice to have access to this information, but it is still pretty hard to navigate sensibly from the patient’s perspective.

I wrote the Opening Chapter  (with Dr. Rob Kolodner, former head of the Office of the National Coordinator (ONC) for health IT at HHS ) in a book : Person-Centered Health Records : Toward HealthePeople, called “Inverting our Perspective” – calling for a generalized move to personalization in health care.  I was also one of the first to call for the personal health record in 1999: in Concepts of the Health Data Vault.

I suspect that Kaiser is working on this in the background – it will be curious to see how they balance their centralized model (which has many benefits) with the personalization of health care that I advocated in my Senate Hearing on the Future of Health IT.

Clinical genomics is still at the early stages of development; perhaps the equivalent of the Wright Brothers at Kitty Hawk.  But the rate of acceleration of the technology behind it is breathtaking.  My fear is that the EHR folks are still going to be building biplanes out of bicycle parts while clinical genomics needs a 747.

I really like the Kaiser “Thrive” tag line… it is energizing when I come in to the offices, and I think it creates a positive framework for health care. This is similar to Jonas Salk’s vision that we need to create an Epidemic of Health.  I think that a key difference between Kaiser’s Thrive campaign is that it is a top down campaign: Kaiser is the organization supporting their patients to thrive.  An epidemic of health model, such as proposed by James Fowler from UCSD, would be more of a viral, peer-to-peer, social network kind of thing.  Again, this might be a shift for a centralized organization like Kaiser to make, as it would necessary to reach outside to non-Kaiser patients.   Kaiser, like all health care organizations, call themselves “Patient Oriented” – and Kaiser makes good on the promise, I think.  But the subtext is still “Only if you are one of OUR patients.”  So, it’s still a “you come first after me” kind of model.  To trigger the epidemic of health “viral” model, we need a broader framework, I think.

Getting my medical records transferred from Scripps is still a hassle.  I’m still trying to figure out the results from a colonoscopy at Scripps from 6 years ago.  Maybe I’ll get the results in in 4-6 weeks.  The were just converting to an Allscripts system when I was leaving, which the docs hated.  The Medical records department said I could NOT get my information from their EHR in computer form, but only by printed copy.   HIPPA regulations require that they transfer the records in the format that they were recorded in, but Scripps is just blowing me off on this.

I went into the Scripps medical record room, where they would let me look at my paper medical record under their careful eye.  I asked if I could take copies of my medical record with my iPhone, and they gasped like I was asking to commit an act of espionage.  I had to pay them per page (I think the price was $2.50/page) and it would take several weeks for the company to come in to copy them.  They explained that this was all for my protection.  The also told me 18 mos ago that my EHR information on Allscripts system was not available for my review, due to “Security” regulations.  I suppose I could have made a ruckus and thrown the HIPPA regulations at them, but I have more important windmills to tilt, (I think).

Speaking of HIPPA, the Kaiser medical record system will send me a message that new data exists on my personal portal, but I have to log on to the portal to see the data.   This is all well and good for privacy, but I really don’t care if folks hack my email and get my fecal sample results or urine PH… I would like the option to have the results sent to me via email.  That way, I could file my medical information under a Gmail label, and have a permanent record of it.  For example, if I had gotten my cholesterol levels via email from both Kaiser and Scripps, it would have been a simple process to just do a Gmail query to get the results in seconds.  No, they would not be semantically interoperable.  And no, they would not support advanced AI decision support.  But still, it would have been “good enough” to get started… and probably create a market for some smart widget designer to make them more compatible.  But at least, it would allow me to connect the dots, rather than have the connections lost in space somewhere.

Email with my physician is excellent.  Very efficient, and it gives me great confidence that I can maintain a close connection with him and his advice, without having to go through the whole appointment process.

All in all, I’m delighted with Kaiser’s services and approach so far.

Next episode:

I worked on a proposal to install the VA VistA system at Kaiser back in the 1990′s.  I’m digging out my notes that I wrote back then, and will see what I was thinking back then.

It’s been over a month now with our new NEST thermostat.   I generally like it, but am not sure of its value beyond the “gee whiz” technology stage. We had one problem with it dropping off into “Away” mode automatically, and my wife not being able to figure out how to turn it back on.  (you have to press the panel, not just turn the dial).

The support line suggested turning off Away mode, as the solution.

Another problem I have with it is that there is no way to figure out what it has been doing.  No trend lines, graphs, on-times…  I think that they are carrying their sense of minimalism too far…

I still like it, but don’t think that its living up to its potential.

Over the years, I’ve done a lot of bareboat sailing around the Caribbean and California Coastline.  Typically, I organize a group of 5-8 people and we’d charter a 45-55 foot sailboat in paradise, cash in some frequent flier mileage, and have a great time at a very low cost.

A friend of mine is going on a trip, and asked me my advice on handling potential seasickness issues.  I thought I’d share my experiences.

Here’s the sequence/levels that I settled in:

I have been following the tragedy of the Costa Concordia cruise ship, wondering how a modern ship with such sophisticated navigation systems could strike a rock and cause such a tragedy.

Here is the ground track of ship and here is an analysis of the situation by professional mariners.

This can’t be anything other than human error…  but then, “to error is human.”

Here is an analysis of the black box of the Air France Crash over the Atlantic in which three experienced pilots did exactly the wrong thing, causing the plane to crash in to ocean:

And the main puzzle, as several of the initial stories point out, is why a team of experienced pilots would have kept pulling back on the controls, to increase the nose-up pitch, when the stall warnings were going off. This is a puzzle because being trained to do exactly the opposite is practically the foundation of learn-to-fly courses. If a plane is losing speed and threatening to stall, you recover by pointing the nose sharply down and adding power (plus other things). This reduces the angle of attack, builds air speed, and allows the wings to start providing lift once again.

From a complexity systems’ perspective, these are pretty simple situations… Even though the cruise ship or the aircraft are incredibly complicated machines, they were responding to simple controls.  I wouldn’t be surprised if the captain of the Costa Concordia could have maneuvered the giant ship with a joystick or a mouse click.  The Airbus behaved exactly as commanded by the pilot, holding the stick in the far back position.

It’s hard to imagine a simpler instruction to a ship’s captain than a prime directive: “Don’t run your ship on to the rocks.”  And every student pilot learns to lower the nose in case of a stall.  Not quite as intuitive, but after a few stomach-churning stalls, the student quickly learns the lesson.  Yet, as simple and intuitive as these lessons are, they have been the cause of two recent tragedies.

Now, let’s look at medical care.  Early in their studies, medical students get an ancient but still current prime directive: primum non nocere – “First, do no harm.”

Managing a patient, however, is much more difficult than moving a joystick on the console of a ship or plane.  People’s lives are at stake, and the deaths occur in isolation, rather than spectacular media events.  But, taken as a whole, they constitute a far greater tragedy than what hits the front pages or twitter’s most popular hash tags.  The Institute of Medicine estimates that at least 44,000 patients die each year from preventable medical errors.  A commendable report from  Patient Safety Commission in Oregon (1.2% of the US population) tallied 32 preventable patient deaths:

At least 32 patients died as a result of preventable errors in Oregon hospitals last year, according to a report released Thursday by the Oregon Patient Safety Commission.  Hospitals reported 136 incidents in 2009… half of the incidents resulted in serious injury or death. In nine cases, a surgical team operated on the wrong body part or the wrong patient. Surgeons accidentally left objects in patients 21 times… The reporting system may underestimate the extent of preventable errors.

In a way, a surgeon operating on the wrong patient is similar to The Costa Concordia’s captain steering his ship onto rocks or the Air France pilots flying their plane into the ocean.  These never should have happened, there are no shades of gray.  Today, the world is abuzz about in a global media frenzy showing the overturned ship with 6 deaths.  This will soon fade, to be replaced by some other event showing even more mediagenic misery.

But patients will continue to die from preventable errors.  From the Oregon report:

Reports of objects accidentally left in surgical patients have declined from a high of 50 in 2007, but the number has persisted at around 40 incidents a year since 2002, leading the commission to conclude that hospitals have not made meaningful progress in reducing such errors.

“There is no indication that it’s going down, which is frustrating,” Dameron said. “Oregon is not unique there. It’s a stubborn problem.”

Epic Systems and Judy Faulkner made the NY Times today, describing their rise over 30 years to be one of the leading EMR vendors.  She came out of the same era as the VA VistA world did; the major difference being that the VistA crowd followed an open source, public domain model, while Epic is one of the most closed, expensive systems on the market.

The President’s Council of Advisors on Science and Technology (PCAST)  issued a report complimenting both Epic and VistA as successful examples of large scale electronic health record systems, not recognizing that they were architectural first cousins.  Both are based on the MUMPS language, and both use a meta-data driven approach (VistA uses FileMan, Epic uses Chronicles).  The report also called for a universal exchange language, not realizing that this was essentially MUMPS is – the result of decades of support from NIH, National Bureau of Standards, NLM, and the VA.

Both systems are recognized by their integrated nature – I used to say that VistA was integrated by virtue of not disintegrating.

It is interesting to contrast the decades-long success of VistA and Epic – based on a unified metatdata system – vs other attempts at integrating “best of breed” systems, such as the fiascos of the National Health Service ($17b)  Ontario ($1b), and AHLTA ($4b).

VistA is free and open source software – Here a complete stack of software that can be loaded and run on any Intel box.  It doesn’t come with a treehouse and slide, unfortunately.  For that, you’ll have to pay milllions to Epic for pretty much the same functionality.

I just noticed a Raffle for a Ronald MacDonald Charity auction for a dream house supposedly worth $2.2 million:  They list the Grand Prize:

• Grand Prize: $2,200,000 San Diego Dream House or $1,500,000 cash

I found the house 3284 Lone Hill Lane, Encinitas, on Zillow.com, and it is estimated to be worth $1.65m.  It is listed for sale at $1.89m.

And to further compound the issue, they claim that it is on a 2.5 acre lot, when it is actually 2.25 acres.

I don’t care how worthy the cause, conducting a raffle on a prize claimed to be worth $2.2m when it is for sale at $1.9m is fraud.  And if the organization descends into this kind of fraudulent activity when it is so easily detected, we have to wonder what other kinds of “creative bookkeeping” is going on in the back rooms.

This is intolerable… we should not let organizations treat the public this way under the guise that they espouse good intentions.  Shenanigans like this damage the whole of the non-profit sector, and erode the the public trust in our charitable givings.

Here is a brief talk ”Future Narratives” I presented at the 2010 Personal Archiving event organized by Jeff Ubois in San Francisco, Feb 16, 2010 at the Internet Archives building.

This is a collection of ideas that I’ve been collecting around the notion of archiving, future binding, good ancestor principle, diachronic information systems (dealing with the flow of meaning over time), personal genomics, and stuff like that.

This is a video transcript of a Skype conversation I had this morning with Ralph Johnson this morning about refactoring VistA. I think that there are some fascinating ideas here about thinking about refactoring in layers, rather than a single lump, as well as the notion of creating a “semantic overlay” layer that would open VistA up to the rest of the Linked Data world (with appropriate security, as already expressed in VistA). Ralph is one of the gurus of object orientated software, agile development, and refactoring. I had a video chat with Ralph Johnson, software refactoring and object-oriented patterns guru, regarding ways of looking at refactoring VistA. He talks about “Big Ball of Mud” systems http://www.laputan.org/mud/ , and ways of managing them, particularly through Shearing Layers http://wirfs-brock.com/blog/2011/08/26/agile-architecture-myths-4-because-you… which were the topic of Stewart Brand’s “How Buildings Learn” book. I talked about VistA patterns of “Creating a Path of Least Resistance” – with the example that the 1978 VistA design meeting created a common date management routine that was Y2K compatible, making it easier to by compatible. I also spoke about the notion of creating a “Shearing Layer” above VistA – a semantic overlay connecting the existing VistA system data dictionary to the outside world, allowing VistA to participate in the Linked Data world, RDF Semantic mashups. This would also have the advantage of extending the current VistA privacy semantics out to the network interface. I also talked about the scale of VIstA being a critical factor that is often overlooked – “bigger is different” and this has both its drawbacks and its advantages.

Today is the 33rd anniversary of the 1978 Oklahoma City kickoff meeting for what was then called the CASS (Computer Assisted Systems Support Staff), later to be called Decentralized Hospital Computer Program, which today is called the VistA EHR.  We had groups from the VA, DoD, Indian Health Service, and other academia.  This is where we laid out the basic structure of the metadata (Data Dictionary), File Manager, the basic utilities (a common date routine, for example, that was Y2K compatible.).

I have lots of stuff to scan and post, but I’ll start with my my original notes for the design of the security system.  This explained the process by which we would control access to patient data through a system of privilege codes.  Our first two files were Patient (#2), and User (#3).  File #1 was supposed to be the Data Dictionary, as a meta-level description of the other files, but that idea (which today might be called Meta-Circular Evaluation of a Homoiconic Language but that was a bridge too far for the times.   So, we spun the data dictionary spun off as it’s own metadata world.  The lesson to learned is that VistA at its core is closer to an LISP-like, artificial intelligence approach than the standard COBOL/SQL “modern model” of the times.  This is the hardest thing for me to communicate to newcomers to the architecture – they look only at the code, not the metadata.

I programmed this security model into the VA’s system, and it was reviewed by the federal Computer Security Center (using what was called the Rainbow security guidelines.)  I remember flying to San Francisco to spend two days with men in black suits who wouldn’t identify the agency they worked for… The system passed with flying colors, and they were very complimentary about the design.   Then, about 7 years later, as we were porting the system to the DoD as the CHCS system, I repeated the validation process, only with a larger group of DoD, GAO, and more mysterious men.  They didn’t bring thumbscrews to test me with, but it was quite a nerve-wracking experience.  We passed that  inquisition, too.

So, these scribbles ended up controlling the access to nearly all federal electronic health record access for the past 3 decades.  (The Indian Health Service also used it for their RPMS system, as well).  As far as I know, they have never been breeched technically.  The problems have always been authorized users doing bad things with the data, such as a VA employee with access to doctors’s records selling a list of their SSNs and home information to some nefarious buyers.

It’s fun to go back to retrace my design steps in the early days.  I drew the original onion diagram on a placemat in June, 1978 at Coffee Dan’s restaurant in Loma Linda, CA. over dinner with George Timson, which delineated the initial core of 19 commands, 22 functions and one data type.  This was before I was hired by the VA; I started in September, 1978.  I think we started with the Patient and User file right off the bat, and this security logic linking the two was probably the first code I wrote.  Then I moved on to writing some of the early data dictionary logic.

I know that Richard Davis from Lexington was also quite active in this area, and one of my primary intellectual sparring partners for wrangling with some of the more abstract issues of the architecture.

This idea has certainly stood the test of time, and I think it could be updated to carry through to an updated approach – coupling the access metadata to the data as it is queried and shared.  I suspect that it could be integrated into an RDF Schema which could be used for generalized connection the Linked Data model.

I just installed my NEST thermostat, and so far, I’m really impressed with it.   My biggest problem doing the install was getting the holes to line up in the drywall.   It took a few attempts, and the wall looks like swiss cheese under the mounting plate, but I got it in OK…

It’s a little strange looking at my thermostat connecting itself to my WiFi, uploading new software, etc. but I guess that is the way things will work in the future.  I downloaded the iPhone app, and now can manage my thermostat from anywhere in the world – no more “Honey, did you remember to turn off the heater?” on the way to the airport.

It will take a while for it to learn our temperature habits, so I can’t judge how smart it is with regard to learning what temp to set.  I’m also wondering how it will handle our occasional thermostat wars, in which my wife and I have different preferred settings.  I didn’t see an option for “husband’s setting takes priority.”

It looks like a very well designed gadget… stay tuned for a follow on review.