Monday, May 04, 2009

Deadly Data

Being an information technology worker, I read with interest this post by Joe Bugajski titled, The Data Model That Nearly Killed Me. Bugajski has decades of experience in engineering with particular expertise in data and application design. He has patents, peer-reviewed publications, and technical book authorship under his belt. When it comes to IT, Bugajski knows what he is talking about. When it comes to medicine he is no expert, but he has a story to tell.

Bugajski’s article details his horrific experience with getting inadequate treatment for a severe asthma attack he suffered earlier this year. He ended up in a large teaching hospital that reportedly has great care. But he describes how the staff fought continuously with the computer system that was supposedly designed to improve the quality of medical care.

The upshot is that the critical medication Bugajski needed was not administered until 34 hours after his arrival at the hospital and 14 hours after his admittance to intensive care. He says that this was significantly due to a poorly designed computer system. The problem was then repeated when a second dose of the medication was due.

While Bugajski’s article is informative, I found the extensive comments at the end of the article even more informative. Some comments focus on IT issues. Many comments coming from health care professionals expose serious flaws in the medical system that are not directly related to the industry’s use (or lack of use) of information technologies.

IT doesn’t always work well with medicine
Some posters suggest that health care IT systems are inadequate because they attempt to address competing requirements. Getting all of a person’s health data in one place is a worthy goal, but privacy concerns (and policies) often limit the ability of different practitioners (and different levels of practitioners) to access all of the pertinent data. Some systems restrict entry of certain types of data in order to limit liability.

Once an error makes it into the system, it is nearly impossible to correct. Too much data can also produce information overload for practitioners interfacing with the system. Systems are not designed to function well with the way practitioners actually think and work. Databases are poor systems for storing some types of medical knowledge and information.

Non-technical issues
Some posters suggest that these technical issues are only peripheral to the main problems in health care. Ian, a self-identified physician writes, “Sad truth: doctors are not paid for treating your pain: they are paid for documenting its location, duration, frequency, timing, quality, modifying factors, and associated symptoms.”

A frequently repeated complaint is that there is fragmented care due to the lack of a patient advocate with adequate knowledge and power to bring the various specialist treatments together to achieve a positive result. Numerous highly trained professionals are each only operating with a small piece of the puzzle. They are not empowered or incentivized to see the big picture. There is no ownership of the patient’s general welfare, so nobody in the system really cares about it.

To counter this lack of incentive, an EMT writes, “There is absolutely no substitute for an active sense of skepticism and a very irritated advocate in any healthcare setting. None.”

Another related matter is explained by a poster name Gerry. “… the physician of today has scant training looking at the patient, but lots of training at looking for a molecular cause for any illness. Thus, they tend to believe the lab more than they believe the patient.”

Charlie, a health systems integrator, feels that the problem lies in medical traditions. He writes, “Today, the culture of American medical professionals seems to be unfortunately similar to that of medieval priests - doctors are trained (through fairly brutal treatment involving sleep deprivation and rigorous indoctrination) to have a certain “hero” mindset and to disregard and distrust outside views that conflict with hierarchically dispensed dogmas.” Practitioners are trained not to ignore outside information but to treat it with disdain. That’s why the pleas of Bugajski and his wife for a known treatment were cast aside by multiple practitioners.

An alarming situation
Several posters alluded to the lack of response to audible (and perhaps visual) alarms on various medical devices. One doctor says that these are often ignored because practitioners already know about and have considered the condition causing the alarm. Even if this is true, it points out a glaring lack of concern for the psychological wellbeing of the patient and his family. To them it looks like the patient’s peril is being ignored. Hasn’t anyone considered how to alert care professionals without freaking out patients and their loved ones?

This brings to light another problem. Every medical device is being developed as a standalone thing. Patients are hooked up to numerous devices that don’t know about and don’t talk to each other, and that don’t provide concerted feedback to practitioners. Why is this the case? Why is there no incentive for developing patient friendly devices that provide useful and concerted feedback to practitioners?

Perverse incentives and myths
Another concern voiced is that creating a government based electronic health care record will produce perverse incentives for officially sanctioned misuse of the data. This will create an incentive for people to be less than forthcoming, perhaps creating dangerous situations. Gattaca anyone?

As I wrote in this post last year, GMU economist Robin Hanson argues that our culture has an unhealthy superstition about the heroic capabilities of modern medical treatment. Our cultural conditioning causes us to develop incentives for spending our health care dollars on things that have little impact rather than on more significant factors, “such as exercise, diet, sleep, smoking, pollution, climate, and social status.”

Hanson’s research reveals that much of our heroic based medicine produces as much in negative effects as it does in positive effects. In this article, Hanson argues that we could cut current medical expenses in half without seeing any real decline in health outcomes. Our culture militates against this and we have a massive medical industry that is heavily invested in the practice of heroic medicine. Despite evidence that this is a poor use of resources, people continually demand more of the same.

It seems clear that health care IT systems are a mixed bag, at best. Perhaps the attempt to develop rational IT models to support an irrational health care system is destined to produce an ill fitting outcome. Possibly we need more discussions about how to achieve better health outcomes than about how to pay for heroic medicine.


David said...

Two thoughts:

1) This discussion surrounds a single instance of an unfortunate medical situation and thus it may not balance the various issues according to their real frequency.

2) While we do have a hero mentality related to medical practice the reality is that this is not simply an issue with physicians and other medical practitioners. In the end they are tradesmen and 99% of the time they will pursue the course that is desired by the patient. So long as patients press for the miracle treatment the doctors will usually bend over backwards to give that treatment and do whatever is necessary to get paid for it.

Steve said...

This is actually related directly to my field (Biomedical Informatics), though not to my area of research interest (for my PhD). While the computer systems surely could have been much better, to me it seems like more of a people issue than a computer issue. That's part of the reason I'm not focusing on this type of research. Not being an MD and not wanting to go into administration, I don't know that I could really make much of a difference in this field. The change has to come from people who can tell the doctors and nurses how to operate. The software developers would like to be able to standardize what they do, but in the end the doctors (who are often hard headed and overworked) do what they want to do, unless their compensation or punishments are directly tied to doing things in a standardized way. And an informatics person (unless they are an MD or administrator) doesn't have the ability to change that very much. At least in my (likely pessimistic) opinion.

This is an example of an extremely bad case that illustrates a real problem. However, one case certainly doesn't prove the theory that IT systems are bad for health care (this is a pet peeve when people do this). IT systems can surely help if done well, but that doesn't mean they will be perfect or be able to fix everything. I think Utah (and in particular Intermountain Health Care) has some of the best health care in the world, and part of that (in my opinion) is that they have (relatively) advanced IT systems.

Reach Upward said...

While this is a single instance, research shows that it in fact represents an all-too-common reality. Practitioners are often prisoners of the organizational behavior fostered by the culture in which they work.

Most of the practitioners that served my father in his last two years of life were good, caring people trying their best to do a decent job. But there was not, in fact, any competent person that could pull together all of the disparate treatments and effects of such treatments. My Mom was tenacious and did loads of research. Some doctors came to hate seeing her accompany my Dad because she asked pointed and informed questions that they were uncomfortable addressing. The most common refrain was that thus-and-such was outside of their area of expertise, although, treatments they were providing were contributing to an effect.

One of the most unfortunate experiences during my father's treatment was when practitioners would refrain from providing the best care possible out of professional courtesy -- being unwilling to step on the toes of a practitioner of a different specialty despite clear indications of what would have been in Dad's best interest.

Recent research (see my 11/18/08 post) has found that for patients with complex health conditions, my Dad's experience is not the exception; it is the rule. We do not have a competent approach to treating complex illness.

A doctor friend honestly told me that most doctors are painfully aware that "if you are good at using a hammer, every problem looks like a nail to you." Coupled with the heroic medicine culture we have evolved, this leads to sub-optimal treatment, even when doctors believe they are doing their best.

I am not comforted by the thought that doctors almost always work to pursue the course the patient wants. Patients ask for drugs by name and doctors prescribe those drugs regardless of whether they are in the patient's best interest or not. Mom's bring their toddlers to the doctor with a cold. Doctors continue to give antibiotics despite oodles of research showing that such broad use of antibiotics is a bad idea. If a patient is better informed than the doctor, then maybe it's good for the doctor to treat per the patient's desires. But this isn't always the case.

Patients press for miracle treatments due to broad cultural acceptance of the hero healer myth and due to perverse incentives that reduce motivation to do the macro things that effect better health rather than focusing heavily on the micro things that try to shut the barn door after the horse is already out.

Bradley Ross said...

My biggest challenge as a patient advocate is the imbalance in knowledge between me and the doctors. They will direct a course of action that I will think is overkill, but when I try to push back, I'm not really sure how far I should push because I'd hate to have my child skip a treatment that was helpful.

I think the primary care physician is supposed to be the person that coordinates all of your care, but I'm not sure how well that works or if PCPs are on board with that strategy. Perhaps improving that patient-advocate role would do more to improve the quality of care than most other innovations, including IT innovations.

Reach Upward said...

A patient advocate needs to have sufficient knowledge and power to properly affect the situation, plus incentives to ensure the patient's best interest. Currently there is hardly ever a single individual that meets all of these criteria in any given medical situation.

Another problem not mentioned in this exchange is the practice of defensive medicine -- ordering tests and treatments that have low likelihood of being necessary, just so that all bases can be covered in the event that a patient sues over perceived inadequate care.