Search all of the Society for Participatory Medicine website:Search

Magical thinking: the ability to draw conclusions that are based on a person’s desire for what reality should be, not necessarily upon what reality actually is.

Cargo Cult HIT:  Concepts in HIT that follow all the apparent precepts and forms of evidence-based methodologies, but are missing something essential, because no one has checked the real end-user needs and capacities.

Washington is abuzz with ARRA and HITECH, meetings & hearings are incessantly happening to define “Meaningful Use”. But where is the patient voice in all of these conversations? Not including strong patient representation at the center of the current and future deliberations increases the risk of implementing a number of magical thinking concepts in EHR and in the development of the National Health Infrastructure. If you doubt my statement read on!

As we move forward with HITECH, it is worthwhile to reread Carol Diamond and Clay Shirky’s brilliant & visionary article, “Health Information Technology: A few years of magical thinking in HIT”, published last year in Health Affairs:

IT is a tool, not a goal. Success should not be measured by the number of hospitals with computerized order entry systems or patients with electronic personal health records. Success is when clinical outcomes improve. Success is when everyone can learn which methods and treatments work, and which don’t, in days instead of decades.

Proponents of health IT must resist “magical thinking,” such as the notion that isolated work on technology will transform our broken system. Another tempting and related notion suggests that a lack of technical standards is the main barrier to health IT adoption. This may explain the stimulus for some national efforts that focus primarily on technical designs and standards for a set of narrow use cases and “early wins.” Without adequate investment in the much harder challenges—such as how to motivate IT adoption toward achieving better health and health care, which financial policies will support this goal, or what information policies are necessary to protect information and engender patient trust—we will surely miss the mark.

My definition of Cargo Cult HIT is based on Nobel Prize winner Richard Feynman’s famous Caltech commencement address given in 1974 (CARGO CULT SCIENCE) and as you’ll see if follows nicely both David Kibbe’s beautiful parable, e-Patient Dave’s view on Meaningful Use and Sarah Greene’s statement on Participatory Medicine.

Feynman’s address still sounds as powerful 35 years later:

During the Middle Ages there were all kinds of crazy ideas, such as that a piece of rhinoceros horn would increase potency. Then a method was discovered for separating the ideas–which was to try one to see if it worked, and if it didn’t work, to eliminate it. This method became organized, of course, into science. And it developed very well, so that we are now in the scientific age. It is such a scientific age, in fact that we have difficulty in understanding how witch doctors could ever have existed, when nothing that they proposed ever really worked–or very little of it did.

… But then I began to think, what else is there that we believe? (And I thought then about the witch doctors, and how easy it would have been to check on them by noticing that nothing really worked.) So I found things that even more people believe, such as that we have some knowledge of how to educate…. We obviously have made no progress–lots of theory, but no progress–in decreasing the amount of crime by the method that we use to handle criminals.

Yet these things are said to be scientific. We study them. And I think ordinary people with commonsense ideas are intimidated by this pseudoscience. I think the educational and psychological studies I mentioned are examples of what I would like to call cargo cult science.

In the South Seas there is a cargo cult of people. During World War II they saw airplanes land with lots of good materials, and they want the same thing to happen now. So they’ve arranged to imitate things like runways, to put fires along the sides of the runways, to make a wooden hut for a man to sit in, with two wooden pieces on his head like headphones and bars of bamboo sticking out like antennas–he’s the controller–and they wait for the airplanes to land. They’re doing everything right. The form is perfect. It looks exactly the way it looked before. But it doesn’t work. No airplanes land. So I call these things cargo cult science, because they follow all the apparent precepts and forms of scientific investigation, but they’re missing something essential, because the planes don’t land.

Strike 1: Who Asked The Patients About Their Experience? Nobody!

Since its beginning I have been trying to make sense of e-Patient Dave’s data transfer kerfuffle in a somehow bigger picture, trying to understand how such an absurd situation could develop and how its causes could be so often misconstrued in the press & blogs. I’ve come to see that this seminal event, caused by an obviously erroneous belief, is the real wake-up call about the dangers of magical thinking in HIT, as the Nation prepares to invest 10’s of Billions into a National Health Infrastructure, based almost exclusively on the input of a coterie of experts who have been working in a vacuum for many years and whose products have never been subjected to real public scrutiny.

Strike 2: Who Asked the Patients About Their Fears? Nobody!

What follows is the story of the (non) adoption of an old technology, RFID adapted for a new, unproven use.  Enter Dr. John Halamka, Harvard Medical School and CareGroup CIO and newly nominated vice-chairman of the HIT Standards Committee, a federal advisory committee charged with making recommendations to the National Coordinator for Health Information Technology (HIT) on standards, implementation specifications, and certification criteria for the electronic exchange and use of health information. Dr. Halamka had an RFID implanted in his shoulder a few years back to test the use of this product.

Other experts described the great value of this technology:

Articles were written in the New England Journal of Medicine and in many other publications with titles such as “RFID Chips Promise To Revamp Medicine“. That story looked really great when the news clips were produced. Experts speaking, complex technological setup and the ubiquitous medical facility environment, all combined to provide an aura of authority. Who could ever doubt that this technological advance could be anything else than a life saver that would be implemented nationwide in just a few years? How could anyone argue with Dr. Halamka’s forceful statement in a PLoS article:

I believe that in the near future, patients will own their medical records and be the stewards of their own health care data. Implantation of RFID devices is one tool, appropriate for some patients based on their personal analysis of risks and benefits, that can empower patients by serving as a source of identity and a link to a personal health record when the patient cannot otherwise communicate.

Fast forward to May 2009. Michael Millenson, a regular contributor to The Health Care Blog wrote “RFID EMR Pioneer Says “RIP”.  The great technology of the future suddenly has no future!

Halamka’s chip remains under his skin but he’s ready to turn over the idea that he’s a trendsetter to the undertaker. The technology “has been adopted by no one,” Halamka told me at a meeting on Patient-Centered Computing sponsored by Partners HealthCare’s Center on Information Technology Leadership. “As a technology it’s dead. Use the network, use the cloud to store your personal health records. Or in a pinch, use a USB drive. But the implanted RFID chip is not as a society where we’re going.”

At this point it is worth looking again at Feynman’s address. After defining the problem (magical thinking) he proposed a solution:

Details that could throw doubt on your interpretation must be given, if you know them. You must do the best you can–if you know anything at all wrong, or possibly wrong–to explain it. If you make a theory, for example, and advertise it, or put it out, then you must also put down all the facts that disagree with it, as well as those that agree with it. There is also a more subtle problem.
When you have put a lot of ideas together to make an elaborate theory, you want to make sure, when explaining what it fits, that those things it fits are not just the things that gave you the idea for the theory; but that the finished theory makes something else come out right, in addition.

In summary, the idea is to try to give all of the information to help others to judge the value of your contribution; not just the information that leads to judgment in one particular direction or another.

You can trust both Carol Diamond & Clay Shirky to always write incisively. But they couldn’t have known they were writing a real HIT prophecy.

Strike 3: Who Asked Patients About Serious Privacy Breaches? Nobody!

A hacker is demanding $10 million in return for the health records of over 8.3 million Virginia residents pertaining to over 35 million prescriptions. With a population just shy of 8 million people, this could mean that virtually every Virginian’s health information is at risk.

The records were lifted from Virginia’s Prescription Monitoring Program (PMP) database. The database was set up in late 2007 to prevent patients from filling multiple prescriptions for items such as painkillers from different doctors.

Another one of these systems, designed by experts with, I am sure, government strength security!

It’s clear that in Health IT, the “3 strikes and you’re out” principle just doesn’t apply. Nonetheless these 3 examples show why, to be successful, Dr David Blumenthal, national coordinator for health information technology, must absolutely include patients or patient representatives in addition to the many policy wonks that have been testifying for the last few months. Patient representation is critical for the acceptance & trust of the public in these very intimidating systems.

People are always reluctant to engage new government sponsored technologies that post and track personal information. So far the experience shows that we are right to be doubtful of the many claims made about EHRs/PHRs. At the same time, implementing EHR/PHR and a National Health Infrastructure is clearly of special importance and should be a national priority.

Patient oversight of the process is as important to the success of the enterprise as any other form of expert advice. Patients — that is you and me — should be the focus of the entire system and have complete ownership and control of all their Electronic Medical Records (EMR) or what is often referred to as Protected Health Information or PHI. We have already witnessed twice that specific technological implementations advocated by experts have failed because NO ONE ever dared to ask the patients if the end result was accurate, useful and improved care. Are we going to subject the whole country to repeated waves of Cargo Cult HIT while the “experts” keep experimenting without consulting the public at EVERY step?

Even though Dave wrote about & dissected it, let’s repeat the Markle Foundation definition of Meaningful Use and make sure it becomes part of the law:

Patient-Centered, Meaningful Use of Health IT:
Demonstrates that the provider makes use of, and the patient has access to, clinically relevant electronic information about the patient to improve patient outcomes and health status, improve the delivery of care, and control the growth of costs.

It is definitely not too much to ask!