Some of you don’t know that I have a background in the computer sciences in addition to my more well-known persona as a self-made nutritional medicine writer. I never thought it would happen, but now these two worlds are coming together.

Now, you can’t just dump all the health data into this file. Like any good file, it should be organized so you, or anybody else, can find what you’re looking for. Is the lab test for blood cholesterol listed under “cholesterol”, “total cholesterol”, “blood lipids”, or “labid6093.1”? That’s why we need a standard for organization of the health data.

But we would not want a situation in which we store all of the world’s health data in a proprietary data format. One owned by Microsoft, for example. What happens when they decide to charge too much money and you want to move your health record to another location but it is completely encrypted in their proprietary format? We don’t want to put ourselves in a situation where we could have our most vital health data held hostage. It would be like having your money at Bank X and when you try to withdraw it, they make it impossible because the dollars are all encoded as special Bank X dollars that can’t be used at any other bank.

So this is why I emphasize that the data organization scheme should be an “open standard”. An Open standard is a standard that is publicly available. This is crucial because it allows the patient to move their universal health record to any hosting site they wish (and that new hosting site is, of course, already using this open, public, standard). This way the health record really does belong to the patient. (Back to the bank metaphor, it is like having your money in gold coins, redeemable anywhere.) (For more information, see the Wikipedia entry for “open standard”.) 

A failure to communicate

Here we are, many years after email, online shopping, wikipedia and online banking and still, when I go to my doctor, he scribbles notes on paper and those get put into a manila file folder and stored in the back office somewhere. It is unbelievable that every other industry has so thoroughly been updated, but medicine, an information intensive practice, is still doing that. It is true that many clinics are now using electronic medical records (EMR) systems, but these do not communicate with each other, and the data stays in the clinic.

So you have a situation where the left hand (one doctor) doesn’t know what the right hand (a specialist) is doing. One problem is that one of those doctors might have some really valuable information the other could use. Another big problem is that medical errors increase because of this.

This situation is like the proverbial group of blind men all regarding different parts of the elephant and having completely different interpretations of what they are “looking” at. No one has the whole picture, and no one medical file covers the complete person.

An essential public utility

The idea of the universal health record (UHR) is that a patient would have just one file:

1. consolidated
2. comprehensive
3. universally accessible from anywhere in the world
4. under the control of the patient
5. and most important of all, is in electronic form so that all the computer-based analytical tools available can be applied to finding things in the patient's record that could be overlooked by a busy doctor.

The patient might relate to the UHR as a sort of personal health journal in which he or she can keep notes of a subjective nature or perhaps the results of home tests like blood pressure. The pharmacist might see it as, primarily, a file for keeping drug use organized. The lab might see it as a modern way to deliver laboratory results to the doctor, and so on. Several otherwise blind men would now have access to the whole elephant.

The universal health record (UHR), itself, may not be an interesting thing. It is, after all, just a glorified file folder (in cyberspace). I see this as being similar to other public utilities. For instance, the cables installed all over the country, once extensive and reliable enough made it possible to call anybody anywhere on the telephone. And the internet itself was only 25 years ago, just an odd system the military had set up for a robust communication in the event of attack. Then, with the invention of html and browsers, we suddenly had the World Wide Web, the utility of which continues to be breathtaking.

Once this UHR, a glorified file folder in cyberspace, is in place, a lot of other really interesting things can happen.

A spell checker for medical practice

With the UHR, mistakes that people tend to make, but not computers, will go sharply down. Medical errors will go down including the inexcusable 770,000 injuries and deaths per year from drug interactions which could have been prevented if the patient’s drug use information had been consolidated. It is often because you have different specialists prescribing different drugs and not communicating with each other, that this scenario is possible. The UHR system, because the data is consolidated, can alert patients and their health care providers directly of potential negative drug interactions.

Universal accessibility

It is also very relevant that the UHR is located at an internet address. This makes it possible to access your full record from anywhere in the world (even from mobile phones). So, if you are in an automobile crash on your vacation in Turkey, no problem. You need the password, of course, and if you’re the cautious type, you might wear that password on you or carry it in your wallet, so emergency staff could get at your record if you’re unconscious.

Better quality medical interpretation

The universal health record (UHR) maintains a complete medical history and keeps track of all drugs and supplements, therapies, treatments, diet, exercise, past laboratory tests, etc. It tracks these things over time, so it can represent data to the doctor in ways that vividly show how all measures of the patient's health are changing over time. Currently, because of the way data is presented to doctors—on single sheets of paper from the lab—there is a tendency to see things as a static snap shot. This system would facilitate a more realistic view of the patient as a dynamic organism changing through time.

Tireless data analysis

All the analytical tools computer technology will offer can be applied to the task of finding things in your record that could be overlooked by a busy doctor. The full force of newly emerging artificial intelligence tools (AI) can be applied but only, of course, once the data is consolidated in the UHR.

Here we are talking about dramatic reductions in healthcare costs. How many would really choose to go to an emergency room (and wait hours) as a first step when they could first check their electronic “Health Coach”, a sort of “virtual doctor” if you will, to get an idea about whether or not they really need to go to the emergency room.

Eventually these AI tools will become more helpful, in some ways, than the human medical personnel. I say “in some ways” because I don’t see this system ever replacing human doctors. It will be more like the doctors have, at their disposal, a 24-hour per day, PhD-level medical research team that costs nearly nothing. And sometimes you might consult that research team directly without unnecessarily “bothering” the doctor.

But some of this AI could be pretty simple. As a personal anecdote, I keep my personal health record in a spread sheet and have occasionally found associations I was not expecting. For instance, I once noticed that, over the span of decades, my cholesterol went up during times when I was taking less thyroid medication. This prompted me to look into it, and I found that, indeed, low thyroid is associated with high cholesterol. I didn’t know it, and no doctor had mentioned it, and it certainly would never have been revealed to me without this kind of longitudinal analysis in my own medical record. A simple pattern recognition tool could find associations like this and prompt the patient to look into the matter further.

Research purposes

The data in the collected UHR system is an epidemiologic research gold mine. We currently pay huge sums to put together large databases like the ones maintained by the National Institutes of Health (NIH). These are incredible sources of coherent data on lifestyles, diet, drugs, supplements and health problems. And from these we can mine data for findings which are still being published. But the UHR could provide far more data than that.

Researchers, however, would not have permission to look at the UHR data unless that permission was specifically granted by the owner of it (the patient). People would be free to grant or not grant permissions just as they will be in that power position with respect to insurance companies and medical service providers. Also, they could easily grant only a selected view of the record containing only the less sensitive data. And there would be no need for the patient to reveal their personal identity (which isn’t necessary for research purposes anyway).

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