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Moving Toward an Open Standard, Universal Health Record

By John Morgenthaler, Health Geek

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.

For years, I’ve been envisioning an open standard, universal health record. This would be a location on the Internet that contains all your health and medical records. It would be complete, consolidated, fully encrypted, and solely under your control. It would be for your eyes only, except when you choose to reveal some selected part of it to a particular person or entity.

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).

Privacy issues

But isn’t this scenario going to cause even more intrusion into our privacy? Well, yes, if this system were established and operated for us by a large, powerful entity such as a government body or any private, for-profit corporation.

(Microsoft has just made their opening move in this area with their unveiling of Health Vault, see www.healthvault.com., with the slogan “Be Well. Protected.”  Although they assure privacy, the system they have developed does not seem to use an open standard data format. Do you really want all your data to be stored in a “vault” controlled by Microsoft?)

So, there is the two-edged sword:  We can have this glorious public utility, but we’ll have to give up more privacy and/or control for it.

Not so fast, because my vision involves a way around that crucial problem and a way that turns this idea into a powerful political force that fuels innovation in medicine, increases health freedom, and leads to an overall improvement in the public health.

The extra empowering ingredients are heavy encryption along with a data format that is an open standard.  

First, about heavy encryption: Think of a bank account to which you have online access. The money in your account is yours, and there is no dispute about that. You can access your accounts over the internet, but the privacy and encryption schemes have been worked out. You have all the convenience of electronic access from anywhere in the world without any loss of privacy or control. And, if you want someone else, a trusted accountant perhaps, to see your accounts, you can give them a password (and then change it later).

Likewise, your UHR contains your complete medical record, yet is encrypted with the same level of protection as your online banking system.

You’ll have several passwords in your UHR, so you can set different information at different sensitivity levels. You might have your blood chemistry lab tests at level one whereas your genetic tests showing cancer propensity are at level five. Then you can choose what level of information access you are going to allow to whom. Maybe level one is for your insurance company, but nobody gets level five access (except you, of course).

Why is it so important for the patient to have control of his or her record?

In the medical industry, the power and access to information is all wacky. We have the insurance companies dictating to doctors what they consider to be acceptable practice. We have the pharmaceutical companies dominating the lobbyist arena and exerting undue influence with the FDA. The FDA … oh, don’t even get me started on the FDA.

Somewhere pretty far down in this complex network of power and flow of information is the lowly doctor, mostly just trying to do the right thing. And patients … well, they are not even represented here. It is as if the entire $1.5 trillion per year industry has been so busy making each other rich, they forgot who the customer is.

It is my contention that this scenario is not only the main reason for such high healthcare costs, but it also dramatically undermines the quality of care, while effectively putting a ball-and-chain on medical innovation.

The UHR, as I envision it, gives the patient the power of "information asymmetry." That is a term from economics meaning, roughly, that whoever has the better access to critical information is who will dominate the negotiation.  So, by putting all the control of the UHR into the hands of patient, he or she becomes the most important decision maker in the industry again. I believe this will revolutionize medicine.

But there is a dark side too.

Soon, gathering extensive genetic information could be routine and the health benefits enormous. But, at the same time, patients will be far more worried about unfriendly bureaucrats peering at this information.  And it is not just genetic information. This, I think, is a general trend in medical technology. The information is getting more powerful and more politically sensitive. Soon people will be asking "whose data is this anyway?" and this will be a political hot button. 

So, we need to be very careful about what we allow to emerge as the standard for keeping medical records because, in the future, they will contain extremely sensitive data, but we’ll be stuck with the standard. With your health record, there is no basis for argument that anyone other than you should control it.

How does your data get into the UHR?

You’ll have your UHR at an internet location (hosted by your choice of hosts), and the data format is such that, at any point, you can pick up and move your UHR to some other hosting company. Using the existing system for addressing internet locations (which is inherently portable) and the existing open source approach to software development, the UHR system can become a true public utility, rather than another institutional program working for special interests. Costs will come down, freedom will increase, medical innovations will be stimulated, competition encouraged, and health improved.

Now that we’ve got the data holder, how does your data get put into it? For starters, you, of course, can add to your own record. And, when you interact with any service provider in the medical industry (hospital, doctor, specialist, analytical laboratory, pharmacy, etc.), they invariably produce data, and you currently have a right to that data. So, very soon the service providers will upload the data they create to your UHR.  And they will do this because it will be understood as an issue of medical ethics to not do it!

A lot of pieces have to come together before the whole system becomes an accepted standard. But eventually—soon I think—a threshold point will be reached, and it will suddenly be unthinkable not to participate.

What next?

So is there anything to do but sit and wait? Yes, over the next few years, as more work is done in this area, don’t support any system that is not based on an open, transparent standard. That includes so far Microsoft and Google, but they could change under pressure. Insist on an open standard where the individual patient controls everything about his or her own universal health record. The last thing we need is for a big brother-ish health records system to become established as the standard.

Also, the next steps probably involve setting up a UHR Standards Committee and getting some lobbying support. So, if you know any philanthropists who would like to support this, send them my way … I’ll carry the banner.

And remember:

It's your body, it's your data … so own it!

Let me hear from you if you are excited about using a Universal Health Record.  I welcome your ideas to help us launch a true open standard UHR.

# # #

John Morgenthaler is the founder of Smart Publications and editor of Smart Publications Health & Wellness Update.  He is a recognized authority on nutritional medicine and has been researching and writing about the topic for more than 20 years.  He has co-authored several books including Smart Drugs & Nutrients and Smart Drugs II.  He can be contacted through his website at www.smart-publications.com.