Tom Munnecke’s Eclectica

CDC announced that there have been two cases of swine flu in San Diego County.  This is an interesting disease from several points of view:

It has a great name.  If it were called Iowa Flu, folks wouldn’t have gotten excited about it.  Swine Flu, on the other hand is disgusting.  Preventing a Swine Flu outbreak is going to get a lot more attention than preventing an Iowa Flu outbreak.  The all time best name for a disease is Flesh-Eating Bacteria.  This is a truly mediagenic name – far better than necrotizing fasciitis.

We successfully fought off an epidemic of it in 1976, with 40 million people being vaccinated.  However, this very success resulted in its being criticized.  It seems the pandemic didn’t materialize after the vaccination – a great example of public health policy:

The cases triggered fear of a pandemic – largely because the lethal 1918 flu pandemic was thought at the time to be a result of a swine flu mutation – that resulted in more than 40 million people being vaccinated. The program was later criticized when a swine flu pandemic did not materialize and a number of cases of vaccine-related side effects were reported.

My mother and father both lost siblings to childhood infections.  My mother-in-law had a life in pain and partially paralyzed due to polio.  The great advance in American life expectancies in the 20th century was largely due to advances in infectious disease control.

Yet it seems we are forgetting the value of public health vaccinations.  The very notion that a vaccination program is criticized because the pandemic didn’t occur is indicative of a much deeper issue – how can we attach value to things that don’t happen?  We only have metrics for the things that become serious to solve as a problem.  Dissolving problems before they exist does get any credit.

I had the pleasure of spending an afternoon talking with Gregory Bateson’s daughter Nora Bateson yesterday.  I got to see a sneak preview of the documentary she is working on called An Ecology of Mind.  One of Gregory’s quotes:

“What pattern connects the crab to the lobster and the orchid to the primrose and all the four of them to me? And me to you?”

I guess if we think of connections and dots, Bateson focused on the connectors – the relationships between things – rather than the dots.  I think that this is an extremely critical message to get across nowadays.  It’s too early to talk about the film, other than to say that she has a unique story to tell. So good luck on your film, Nora. Here’s how folks can support the film.

Here is a great article by Kenneth Mandl and Isaac Kohane No Small Change for the Health Information Economy on the need for health IT to be flexible and adaptive:

Flexibility is critical, since the system will have to function under new policies and in the service of new health care delivery mechanisms, and it will need to incorporate emerging information technologies on an ongoing basis. As we seek to design a system that will constantly evolve and encourage innovation, we can glean lessons from large-scale information-technology successes in other fields. An essential first lesson is that ideally, system components should be not only interoperable but also substitutable.

I’ve worked with (Zak) Kohane for 15 years or so, and have always appreciated his perspective on health IT.  I’ll quibble with his use of ATM machine metaphor for health IT, though.  ATMs deal with transactions – things that happen at a specific commit point (“press the OK button”), according to an exactly predefined categories (there is not confusion about credit or debit, or amount), and can be added up at the end of the month: your beginning balance plus transactions equals your ending balance.  This is wonderful for checking accounts.

However, I don’t think we can run the health care system using the metaphor of the transactions.  We can’t simply add up everything the doctor does to you for the month, add it to your health at the beginning of the month, and come up with your current health.  In fact, transactionalizing health care is one of the fundamental evils of our current system.  Things that DON’T happen as transactions (e.g. taking a brisk walk with one’s spouse every night) may actually have the greatest health care benefits.  If we wait for problems to require intervention (being prescribed antidepressants for feeling like a worthless couch potato), we see transactions appearing, and it would seem that we are doing the right thing.

We need a model of health care that deals with transformations, not transactions.  Transformations happen to the individual – and may not even involve interventions by professionals, hospitals, or even generate billable transactions.  To design health IT to be exclusively focused on “enterprises” delivering “health care” to “consumers,” even “empowered consumers” is backwards.

We need to be focused on the individual first and foremost.  Enterprises should be “tethered” to their patients, not the other way ’round.

I wrote a little about this in Transformational Ensembles.

Dear President Obama,

I just read your speech, The Care They Were Promised and the Benefits That They Have Earned:

I can’t tell you how many stories that I heard during the course of the last several years, first as a United States senator and then as a candidate, about veterans who were finding it almost impossible to get the benefits that they had earned despite the fact that their disabilities or their needs were evident for all to see.

As someone who worked within the VA for 8 years, and as a consultant to it for some time after that, I think you should understand the distinction between the VA’s health care and benefits groups.  The health care system, driven by a computer system called VistA, has earned many accolades as an advanced health information system.  (See Philip Longman’s Best Care Anywhere)

The benefits side of VA – that source of the eligibility determination mess – has been an organizational swamp ever since I can remember.  The problem is not computers, but basic bureaucratic incompetency fueled by an OMB process that rewards incompetent, inefficient workers with larger staffs and corresponding promotions and job security.  If they automated their systems to become more efficient, they would lose staff, job security, and bureaucratic turf.  This is the core problem, not “computers.”

Please DO NOT confuse administrative information with medical information.  One of the reasons that we were able to succeed with the medical information aspects of VistA was that we did not focus on billing or adminstrative data.  We started with a medical record model and focused on that.

Rather than tethering VA’s medical record system to the benefits administration swamp and the DoD’s AHLTA fiasco, I think you should consider it part of a larger scheme of a Health Communication System.

And hold VA employees responsible for the mess that they have been perpetrating on our veterans for the last 30-40 years or so.  Let’s start with the promise of a 25% reduction in force in the benefits staff if they do not clear up their eligibility determination workflow to a reasonable level by December 2010.

P.S. In reward for my work as one of the initial designers of the VA VistA system, I was downgraded.  It seems that I was working with peers across the VA, rather than building a pyramid under me.

Perhaps some reform with OMB personnel regulations might be more fruitful than forcing computer systems on bureaucrats who don’t want them.

I just read the Obama press release for the Joint Virtual Lifetime Electronic Record

Today, the President, along with Secretary Gates and Secretary Shinseki, announced that the Department of Defense and the Department of Veterans Affairs have taken the first step in creating a Joint Virtual Lifetime Electronic Record.  Currently, there is no comprehensive system in place that allows for a streamlined transition of health care records between DOD and the VA.  Both Departments will work together to define and build a system that will ultimately contain administrative and medical information from the day an individual enters military service throughout their military career, and after they leave the military.

This has been my briar patch for over 30 years now, as one of the chief software architects of both the VA’s VistA (DHCP) as a VA employee and the DoD’s Composite Health Care System as an employee of SAIC, the prime contractor.

This sounds like a good idea on the surface, and its the first time I’ve seen this at the executive, rather than huffing and puffing from the hill. (About every 10 years, someone gets excited about this issue, but then it gets bogged down when the mid-level bureaucrats on both sides realize that doing it would cause them to lose turf.)

Some questions, however;

Why “Virtual?” – This should is the “real” record. The ep

Why limit this to just active military and veterans? – There is a core cloud of data that is remarkably common to them both, despite the agency’s pleas of uniqueness.  Yes, Air Force has “flight status” that the Army doesn’t have, but the fact is that the architecture needs to adapt to these things and many others.

This should be part of a Universal Health Dashboard for health communications for all Americans, not just the military, focused on health communications.  The medical record is but one form of communication, but it is a minor portion of the overall communications required.  I learned about how critical communications in health care was when I wrote the original MailMan system (no relation to the Python list manager of the same name) in Vista and CHCS – about 25% of the hospital’s transactions turned out to be mail, rather than data-oriented transactions.

This should be based on an evolutionary network approach, rather than a brittle, specifications-driven model that assumes that folks in Washington know today precisely what is needed in the future.  DHCP (VistA) was designed to be an evolutionary system, a fact that seems to be lost to some of the proposals I’ve seen today.

This should be based on FOSS – Free and Open Software.  This will send the industry into a catatonic fit, but I think it imperative that we have an open, scalable, foundational approach to our software design.  This also violates many principles of Vendor Friendly Contracting, so its quite an uphill battle.

This should be the core of health care reform effort in the US, a truly patient-centered platform that puts the patient at the center of the health communications universe.  Providers should be tethered to patients (at their discretion), rather than the perverse model of tethering the Personal Health Record to the capturing Provider.

See my 1999 comments on the Personal Health Record.

(Tip of the Hat: This post came out of a conversation with Heather Wood Ion about health care reform)

One of the most critical issues facing our health care reform efforts today is how information technology will relate to it.  Since I’ve been running around the Health IT briar patch for three decades now, I’ve seen wonderful examples of successful (VA’s VistA), featured in Philip Longman’s Best Care Anywhere as well as an endless stream of failures (Kaiser Permanente threw out a $1.5 billion effort to automate its hospitals; DoD has spent $4 billion on its AHLTA system that is so bad that it is cited as the third most frequent reason causing docs to leave military service.)

Lesson Learned:  Throwing money at a hospital information system does not guarantee it will work.  It is the conceptual foundations of the approach and the organizational readiness to change that are the most critical factors.

I am concerned about much of what I read about the Health IT spending – and the assumption that $20 billion or $100 billion stimulus will result in a viable national health information network.  There is very little empirical evidence that these assumptions are reasonable.  Even more so, the system that we might end up with risks severe negative consequences to the our health care system (see AHLTA is Intolerable)  We run the very real risk of a system that falls behind in practice, yet is propped up by bureaucratic inertia and the assumption that “$100 billion can’t be wrong.”  France faced a problem like this as they supported a “MiniTel” system as a kind of dedicated telephone-keyboard-yellowpages service to all customers just as the World Wide Web was taking off.  The French ended up with a closed, expensive, slow system even while the web offered an open, inexpensive, high speed solution which set them back billions of Francs and years of technology advance.

I believe that we should drive our health care reform from an information technology perspective.  This was my goal in working with the original VistA system for the VA – overcoming all the bureaucratic “stovepipe” divisions by introducing decentralized information systems.  We are seeing today only the tip of a huge iceberg in terms of the amazing advances in computing, communications, telemedicine, lab-on-a-chip, genomics, etc.

The status quo is not going to be happy about all these changes.  Clinical laboratories are not going to be happy about inexpensive home use of lab-on-a-chip diagnositic tools.  Audiologists who sell $3600 hearing aids (using today’s $20 chips) with complicated fitting procedures are not going to be happy with the $100 self-fitting aids.  Optometrists are not going to be happy with over the counter eyeglasses that would allow Wal Mart customers to insert blank lens into a machine, tweak the dials until they see best, press a button, and walk off with a new set of glasses that work exactly how they want for $20.

Disruptive innovation is by definition not welcome to the status quo, but it is a necessary task of innovation and growth.  The automotive industry was not invented by the buggy-whip manufacturers.  And if they held sway in controlling the transportation industry, we would never have evolved past the horse-and-buggy.

A key issue in the coming heath IT/health care reform is the role of the Personal Health Record (PHR).  I’ve been advocating a PHR-based approach for 10 years now   The question to be resolved is how this is to be structured: is the personal health information tethered to a specific enterprise, or is it the other way around.  Why not make the patient the center of the health care universe, and tether the providers to them?

This is disruptive innovation at its best.  Imagine having a Universal Health Dashboard for every American.  They would be able to see all of their health information, and see who has been accessing it.  Patients could see if their doc looked at the lab tests from last visit; docs would know that their patients would see if they’ve ignored their tests).  Enterprise health records would appear as folders on the individual’s dashboards, just part of a much larger Health Communication System.

Here are some papers I’ve written in the past:

See Concepts of the Data Vault

HealthSpace

Health and the Devil’s Staircase

Ensembles and Transformations

and Many More