Everyone knows the answer, so why is no one building the solution?

In my previous blog post, I spoke at length about the true driving factors behind the way in which electronic medical record systems [EMRs] manage your data. The emphasis in this last statement is the word “your”. Based on centuries if not millennia of tradition, it has always been assumed that the healer owned the information about your medical condition. Part of this was because understanding your medical condition required years of training. But there never seemed to be any cognizance of a patient’s right to have some control over this information.

Another distinctive feature about old versus newer medicine was that throughout history, healers were by no means commonplace, and thus beyond the one healer per group, there was no one to go to for a second opinion. The idea of taking your information [carved in stone, like the Flintstones?] to another healer, was not standard practice. Generally speaking, the patient and healer lived in close proximity throughout their lifetimes. Wireless internet wasn’t really necessary when healers actually made house calls.

Laws have been much more recently passed that make it absolutely clear that the owner of a person’s medical information is the person him or herself. Even if that person does not understand the contents of the medical record, nevertheless, it is that person’s right to distribute the medical information in his or her own decided way.

One can find a very crude parallel in the managing of one’s own car. Personally, I’m not even sure where the engine is. But the car is mine, and the contents are mine, and the decision to take the car for repair to a particular mechanic is mine. Actually, my wife does it all, but I digress. And if at any moment I decide to change mechanics, that’s my right. If my previous mechanic printed out any of the information about my car, and I was wise enough to keep a copy, then it would be my right to hand this information over to my new mechanic. In the world of medicine, sharing medical information should work in this way, and be this straightforward. But it still is not.

In an article that I just read yesterday, called “The Best Way to Share Health Records? An App in the Patient’s Hands“, the authors compare sharing of medical information to the sharing of financial information, as is necessary when millions of Americans file their taxes. The article argues a point that I have been personally making for years.

While medical information is understandably very sensitive, for the vast majority of people, their clinical history is nothing short of boring. With full access to people’s medical records, a stranger would find out that most people have high blood pressure, diabetes, hemorrhoids, etc. This is not the kind of information that would turn the world upside down on its head (I know our round world does not have a head, but I was never very good at geometry).

On the other hand, even the most innocent of us may have certain financial activities that we would prefer not being publicized. These activities might be more innocent [such as lending money to a friend in need, who is hiding his financial difficulties from his children] or more evil-ish (such as planning to take over the world … “No, Mr Bond, I expect you to die“).

Ultimately, exposing a person’s financial history is far more damaging than exposing their medical history. Show me someone’s financial history, and you can often work backwards and figure out a great part of their medical history (just watch Law and Order, seasons 1 through 20). Yet, every day, millions and millions of Americans count on totally computerized systems to keep track of their deposits, savings, mortgage accounts, hidden accounts and the like. How is it that the system that is responsible for tracking far more sensitive information, is considered barely adequate to manage the general population’s health information?

I apologize for how X-files this sound (by the way, the new episodes are fantastic), but I personally think that there has been an incredibly successful marketing plan, carried out subliminally by actors (not George Clooney) in the medical world who have what to gain from the delay in the implementation of EMRs. I feel so paranoid about this topic, because I just simply cannot understand where the panic about leaked medical information is coming from. I could also argue that in practice, so much medical and financial information has been leaked just in the last few years, it is hard to believe that there are many Americans who don’t have their deepest darkest secrets floating around the dark net (as regards the dark net, you HAVE to watch Mr Robot).

As the title of the article I noted above states, the authors feel that an app in the patient’s hands would be the ideal way to share health records. I totally agree. In fact, this reminds me of a meeting that I attended close to 9 years ago in Israel, related to the topic of PACS management across Israel’s multiple hospitals. The term PACS refers to a very elaborate system of standards for software and hardware that handle the acquisition, storage and movement of digital medical images from one point to another.

These days in the westernized world, every time a person has an x-ray of their hand or an MRI of their brain or an angiography of their hearts, the information is almost surely stored in a PACS system. The PACS system is able to read digital descriptive information that is associated with each image, and thereby organize literally billions of images in a clear and concise way. Such systems make it possible to quickly  access and review images even from years earlier.

Comparing present films to old films suddenly became practical when PACS systems were introduced. The entire technology surrounding PACS systems has unquestionably changed medicine for the positive. Actually, it also increased exposure to medical liability because now, old films showing missed small findings from years earlier, could be much more easily retrieved.

So 9 years ago, I remember there being a heated debate amongst the representatives of the different hospitals and HMOs about the difficulty of sharing a PACS image between institutions. Even though PACS systems are strongly standardized (as I noted above), there still is a lot of wiggle room for making each system relatively unique. Far too often, patients would be forced to repeat an imaging study in order to have the particular images be recorded into the local hospital’s PACS system. Because it was so hard to move the images over, it was easier (on the hospital) to repeat the study.

So imagine that a patient has done a CT at one hospital, yet is required to repeat the exact same CT at a second hospital. Why? Because certain internal codes for tracking patients are different between medical institutions and there is no translation table for converting one hospital’s codes to that of the other (but these codes are automatically set when the radiology study is done on the local hospital’s CT). Or, it could be a financial issue, i.e. the second hospital also wants to get paid for the patient undergoing a CT. Or it could be medicolegal, i.e. if the films are not IN the hospital’s PACS, the radiologist is concerned that the images will get lost and boomerang legally in a future lawsuit. The fact that patients tolerate such insanity is once again proof of medicine’s unique standing in popular culture as far as being too often above reproach.

So in this meeting from nearly a decade ago, I raised my hand and asked why we could not turn to a company like Microsoft that had just released a new system called HealthVault. HealthVault was a personal health record system that would allow individuals to create online accounts filled with their personal medical information. The idea would be that HealthVault could communicate with multiple EMRs and PACS systems, and thus also automatically centralize all of the patient’s information in one place.

Given Microsoft’s strength in the market, I felt that this would be an ideal win-win situation. Israel was already a highly computerized country in terms of its medical services, and Microsoft could literally create a HealthVault account for every citizen in Israel [which is only a few million people, and far less than  many states in America]. Israel could be the guinea pig/beta site for testing such a system, and for getting all of its kinks out. In return, Israel would have a single system, controlled by the patients, that managed all of the medical information available. Patients would decide who would get to see their information and how it would be distributed.

I should point out that of late, Apple has introduced a similar concept called HealthKit. Using HealthKit, it is possible to build units of medical functionality geared towards the general public. In this day and age of wearable computing, HealthKit is also able to automatically input information from all types of monitors. Apple has already succeeded in getting the largest EMR company in the United States, called EPIC, to write code to exchange information with Apple HealthKit. This single success is enormous. Suddenly a huge player in the EMR market is working together with a consumer oriented company in order to make medical information totally accessible, and totally under the control of, the patient.

So nine years ago, when I asked why Israel could not create such a system via Microsoft, and five years ago when I asked the same question following a similar debate about the difficulty of sharing data, I was given the same answer: politics. I will not repeat my rant from my previous blog post, but I will say that everyone in that conference room realized that the problem was not technical, technological nor even financial. Just like I described in my previous blog post, the intent was to make it extremely difficult for a patient to readily change his physician and/or HMO and/or commonly used hospital. Even getting a second opinion from another doctor required a Sisyphean effort to collect all of the medical data necessary.

It is said, very sadly, that the “best” thing that can ever happen in medical research  is for a well-known star to be afflicted with a particular disease. This horribly insensitive statement has unfortunately been proven true far too many times. Whether it’s spinal cord damage or Parkinson’s disease, once a celebrity is associated with a particular malady, the public rises up and pushes money at the problem and demands results.

Perhaps what is missing in the EMR world is the story of a very famous individual, loved by millions, who suffers horribly due to the very public failure of medical institutions to exchange information. Perhaps it will require massive embarrassment and an even bigger lawsuit to finally get every player in the healthcare market on board, to make sure that every patient has access to their medical information 24/7.

I, for one, have no other answer for how to fix this problem. Perhaps, Apple will become the de facto standard for sharing personal medical information as it continues to connect its systems to all of the major EMRs across the United States. I personally am not a fan of Apple and I’m not necessarily pleased with the idea that they would be the ultimate safeguard for an entire country’s healthcare information. But if this is the price to pay in order for people to be spared pain, suffering, expense and even death due to the failure of sharing information, then that’s a price I would personally be willing to pay. I guess that means I can tell Mulder and Scully to drop the case.

Thanks for listening.