Why can’t your medical data follow you when you travel?

We’ve all done it. You throw your clothes in a bag and head to the airport. Sixteen hours later, you’re in a country where the customs, dress, language and food are very different from home.  As you leave the airport, you stop at an ATM, and within seconds have enough local currency for a taxi and a few meals. All you needed was an ATM card and some money in the bank.

In fact, your trip is going really well until you slip on some ice and fall down a flight of stairs. As you tumble to the bottom and see your femur bone break through the skin, you wonder whether you will be awake to tell the hospital about your allergy to local anesthetics and your heart disease, which has left you with an abnormal heart rhythm.

When you wake up from the surgery to fix your leg, you hear the story about how the anesthesiologist had contacted your office, your office had contacted your spouse, your spouse had contacted your doctor, who provided the anesthesiologist with the information she needed. You were really lucky that everyone needed could be reached and your medical care did not make you worse.

Why can’t our medical information be more like our ATMs?  Shouldn’t you be able to bring up your medical records in any place in the world?  There are a number of reasons why this is not the case. First, medicine is harder than banking. All an ATM needs to know is the bank (a number), my account (another number), my balance (another number) and what withdrawal privileges I have (something that can be easily coded into a number).  In contrast, there are many different kinds of data fields in a medical record that involve text, which is harder to standardize and communicate, from family history to the interpretation of radiographs to pathology reports.

Second, even though there are widely accepted diagnostic codes – established shorthand for common conditions – the way doctors choose to use one code or another is not in itself codified. Since there are many ways to portray the same diagnosis, there is much room for confusion.

Nevertheless, medical information is easily exchanged within many countries, where there are established standards to ensure that all recording systems use the same approach to coding laboratory results, diagnoses and treatments. Unfortunately, the standards in one country are not universal, and without universal standards the likelihood of being able to bring up a person’s medical records in Mali, Singapore, Tibet, Romania and the USA are slim.

Certain organizations, such as CDISC, are devoted to establishing international medical data exchange standards. CDISC has been at this problem for over a decade and is making real progress, albeit slowly. It’s easy to understand why change is taking so long when you consider that in the USA alone, we can’t even agree to have a single patient identifier across the country. Add to this the problem that records may exist in many different languages and that translation from one language to another is never simple. A mistranslation when you’re ordering dinner is one thing; when it’s a life-saving drug, it’s another.

On top of that, we have the problem that many places already have established systems that work for them. Anyone who has tried to upgrade the apps on their smartphone knows that making what seems to be a simple change is fraught with bugs. Why should any country with a well-functioning system want to change the way it does business to help others?

The answer is that the world is getting smaller, and everyone needs to be able to work with each other. These problems are all solvable. Indeed, standard medical dictionaries exist in many languages, and standards organizations are working to get regulators and the companies that make medical recording technology to adopt consistent coding for the various fields that need to be completed.

We have successfully standardized time zones, air traffic control, and electronic platforms for music and video.  It can be done for medicine, but it takes will and money.  If we fail to do this, we will relive the story of the Tower of Babel, doomed to suffer from mutual misunderstandings. The idea of being able to pick up your medical records anywhere in the world as easily as you can pick up cash should not be allowed to remain a distant dream.

Author: Jeff Drazen is Editor-in-Chief, The New England Journal of medicine and a member of the World Economic Forum’s Global Agenda Council on Personalized and Precision Medicine. The Summit on the Global Agenda will be taking place in Abu Dhabi, United Arab Emirates, 18 – 20 November.

Image: Footprints are seen on a beach in Sydney REUTERS/Tim Wimborne.